Join Dr. Virginia Steen, Professor of Medicine and Rheumatology Fellowship Director at Georgetown University Medical Center, as she discusses the risk factors for the various types of PH that can occur in scleroderma, the differences between the diagnosis and management of PH and scleroderma compared to other diseases and how scleroderma manifestations affect the treatment of PH.

Presenter: Virginia D. Steen, MD

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Join Dr. Virginia Steen, Professor of Medicine and Rheumatology Fellowship Director at Georgetown University Medical Center, as she discusses the risk factors for the various types of PH that can occur in scleroderma, the differences between the diagnosis and management of PH and scleroderma compared to other diseases and how scleroderma manifestations affect the treatment of PH.

Presenter: Virginia D. Steen, MD

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Join Dr. Anna Hemnes, PH clinician and researcher from Vanderbilt University, for a presentation on the relationship between nutrition and disease and learn how modifying your lifestyle can improve your disease state.

Presenter: Anna Hemnes, MD

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It is an exciting time for PAH research. Over the past 17 years, many PAH therapies have been approved by the FDA. Join Dr. Michael McGoon from the Mayo Clinic for a presentation about current treatments and treatments in the pipeline.

Presenter: Michael McGoon, MD

Watch event recording

Join Dr. Anna Hemnes, PH clinician and researcher from Vanderbilt University, for a presentation on the relationship between nutrition and disease and learn how modifying your lifestyle can improve your disease state.

Presenter: Anna Hemnes, MD

Register now

Develop your personal toolkit for coping with stressful situations. Join Dr. Rana Awdish for a presentation on using breathing techniques and meditation as a means of stress relief.

Presenter: Dr. Rana Lee Adawi Awdish, MD

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As a caregiver, you may find yourself in the position of advocating for your loved one in many everyday situations - at the supermarket, the doctor's office, with friends, and more. This webinar will discuss how to approach these situations, how to best support your loved one in advocating for themselves when appropriate, and what to do when you just can’t get the message through.

Presenter: Allyson Rupp, LCSW

Watch event recording

Mon, Mar 25, 2013
2:00 p.m. ET
Webinar (Phone AND Internet)

Develop your personal toolkit for coping with stressful situations. Join Dr. Rana Awdish for a presentation on using breathing techniques and meditation as a means of stress relief.

Presenter: Dr. Rana Lee Adawi Awdish, MD

Register now

Coping with a new pulmonary hypertension diagnosis may be challenging, but there are things you can do to help you feel your best. In this webinar Janet Pinson, NP, will discuss tips for communicating effectively with your family and friends about your PH and ways to maintain good emotional health.

Presenter: Janet Pinson, NP

Watch event recording

Every year at PHA takes on a special meaning, and 2012 was no different. This past year was marked by continued progress in the fight against PH through research, education, advocacy and awareness. In this webinar, PHA’s President, Rino Aldrighetti, will discuss the current state of PHA and the growth of the PH community. He will review PHA’s recent accomplishments and share goals for the new year.

Presenter: Rino Aldrighetti, PHA President and CEO

Watch event recording

Start out the new year right by making a commitment to yourself to achieve your best health possible. Join Christine Archer-Chicko, MSN, CRNP as she shares strategies on being proactive about your health and improving your quality of life.

Presenter: Christine Archer-Chicko, MSN, CRNP

Watch event recording

If you were recently diagnosed with pulmonary hypertension, please join us for a webinar especially designed for you. Wendy Hill, MSN, NP-C will review the basics every pulmonary hypertension patient should know about PH, its treatment and coping with this disease.

Presenter: Wendy Hill, MSN, NP-C

Watch event recording

Yoga can be a safe, restorative and rewarding option for PH patients looking to stay active. Join Dr. Rana Awdish, MD for a presentation on the benefits and best practices for PH-friendly yoga.

Presenter: Dr. Rana Adawi Awdish, MD

Watch event recording

Mon, Feb 25, 2013
4:00 p.m. ET
Webinar (Phone AND Internet)

Coping with a new pulmonary hypertension diagnosis may be challenging, but there are things you can do to help you feel your best. In this webinar Janet Pinson, NP, will discuss tips for communicating effectively with your family and friends about your PH and ways to maintain good emotional health.

Presenter: Janet Pinson, NP

Register now

The Tom Lantos Innovation in Community Service Awards provide grants of up to $5,000 each to members of the PH community to act on their own ideas about serving the PH community.  Learn the ingredients of a strong Lantos Grant application in this webinar featuring Mollie Katz, PHA’s Vice President of Community Engagement and the coordinator of the Lantos grant program.  To help you prepare to submit an application by the Feb. 27 due date, Mollie will discuss the purpose of the grants, explain the grant application process, offer guidance on writing successful applications and answer your questions.

Presenter:  Mollie Katz, PHA’s Vice President, Community Engagement

Watch event recording

Fri, Feb 22, 2013
2:00 p.m. ET
Webinar (Phone AND Internet)

Every year at PHA takes on a special meaning, and 2012 was no different. This past year was marked by continued progress in the fight against PH through research, education, advocacy and awareness. In this webinar, PHA’s President, Rino Aldrighetti, will discuss the current state of PHA and the growth of the PH community. He will review PHA’s recent accomplishments and share goals for the new year.

Register now

Fri, Feb 1, 2013
2:00 p.m. ET
Webinar (Phone AND Internet)

Start out the new year right by making a commitment to yourself to achieve your best health possible. Join Christine Archer-Chicko, MSN, CRNP as she shares strategies on being proactive about your health and improving your quality of life.

Register now

Mon, Jan 28, 2013
3 p.m. ET
Webinar (Phone AND Internet)

If you were recently diagnosed with pulmonary hypertension, please join us for a webinar especially designed for you. Wendy Hill, MSN, NP-C will review the basics every pulmonary hypertension patient should know about PH, its treatment and coping with this disease.

Register now

Does shopping for healthy foods seem daunting to you? With the countless number of options available, how do you know what to buy? Misty Lewis, a certified health coach, will take you on a virtual grocery store tour and present tips on healthy food shopping. Everyone in our community – patients, caregivers, and medical professionals alike – can benefit from Misty’s advice and get a head-start on your New Year’s resolution to eat better in 2013!

Presenter: Misty Lewis, CHHC, AADP

Watch event recording

The Tom Lantos Innovation in Community Service Awards provide grants of up to $5,000 each to members of the PH community to act on their own ideas about serving the PH community.  Learn the ingredients of a strong Lantos Grant application in this webinar featuring Mollie Katz, PHA’s Vice President of Community Engagement and the coordinator of the Lantos grant program.  To help you prepare to submit an application by the Feb. 27 due date, Mollie will discuss the purpose of the grants, explain the grant application process, offer guidance on writing successful applications and answer your questions. 

Presenter:  Mollie Katz, PHA’s Vice President, Community Engagement

Register now

Join us for a discussion of common adolescent issues impacting youth ages 10 – mid-20s, such as puberty, dating and self-esteem, and how they relate to your child’s PH, transition to independence and living with PH.

Presenters:

• Holly Gooding, MD, MS, Boston Children's Hospital and Brigham and Women's Hospital
• Carson Emmons Smith, MPA, PHA Email Mentor
• Mary Mullen, MD, PhD, Boston Children's Hospital and Harvard Medical School

Watch event recording

Thurs, Nov 29, 2012
2:00 p.m. ET
Webinar (Phone AND Internet)

Early diagnosis is a pressing new priority at PHA. Find out from two leading PH physicians why early diagnosis is essential, how to screen for PH and what PHA’s Sometimes it’s PH campaign is doing to inform and educate more health care providers to spot PH early. The webinar is hosted by the American Thoracic Society (ATS) in collaboration with PHA for ATS Pulmonary Hypertension Week Nov. 25-30. 

Presenters: Lynn Brown, MD, PhD, University of Utah and Peter Leary, MD, University of Washington

Register now

Fri, Dec 14, 2012
12:00 p.m. ET
Webinar (Phone AND Internet)

Does shopping for healthy foods seem daunting to you? With the countless number of options available, how do you know what to buy? Misty Lewis, a certified health coach, will take you on a virtual grocery store tour and present tips on healthy food shopping. Everyone in our community – patients, caregivers, and medical professionals alike – can benefit from Misty’s advice and get a head-start on your New Year’s resolution to eat better in 2013!

Presenter: Misty Lewis, CHHC, AADP

Register now

Tues, Jan 22, 2012
2:00 p.m. ET
Webinar (Phone AND Internet)

Yoga can be a safe, restorative and rewarding option for PH patients looking to stay active. Join Dr. Rana Awdish, MD for a presentation on the benefits and best practices for PH-friendly yoga.

Presenter: Dr. Rana Adawi Awdish, MD

Register now

Medicare Part D open enrollment—your opportunity to make changes to your Part D coverage—begins October 15. Prepare for open enrollment with a transcript from a PHA interactive web chat. Amy Jackson of the Caring Voice Coalition and Doug Taylor, a PHA Support Group Leader, discuss tips on the process—from what to look for in a Part D plan to how to navigate the online plan finder.

Read chat transcript

When you raise awareness about PH during Pulmonary Hypertension Awareness Month in November, you’re part of a global team thousands strong. Get your awareness-raising juices flowing and your how-to questions answered with this webinar recording.

Presenters:

• Elisabeth Williams, PHA's Grassroots Campaigns Manager
• Jessica McKearin, PHA's Director of Special Events
• Ellen Leoni, PHA's Development Associate

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Applying for Social Security Disability benefits can be challenging, but preparation and the right documents can make it easier. Amy Jackson of the Caring Voice Coalition and Charlotte McCabe, a PH patient and successful SSD applicant, discuss tips on the process—from deciding to apply to what to do if you receive a denial.

Presenters:

• Amy Jackson, Insurance Education and Counseling Team Coordinator at Caring Voice Coalition, Inc.
• Charlotte McCabe, Support Group Leader

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Would you like to see more stories about pulmonary hypertension in the media? With advice and materials from PHA, you, and PH, can make the news. PH patient Jeannette Morrill and Mollie Katz, PHA’s Vice President of Community Engagement, share strategies for catching journalists' attention and getting media coverage.

Presenters:

• Elisabeth Williams, PHA's Grassroots Campaigns Manager
• Mollie Katz, PHA's Vice President, Community Engagement
• Jeannette Morrill, PHAware Campaign Member

Watch event recording

Wed, Oct 10, 2012
2:00 p.m. ET
Online Chat

Medicare Part D open enrollment—your opportunity to make changes to your Part D coverage—begins October 15. Prepare for open enrollment with PHA’s interactive web chat. Join Amy Jackson of the Caring Voice Coalition and Doug Taylor, a PHA Support Group Leader, for tips on the process—from what to look for in a Part D plan to how to navigate the online plan finder.

Register now

Wed, Sep 26, 2012
2:00 p.m. ET
Webinar (Phone AND Internet)

When you raise awareness about PH during Pulmonary Hypertension Awareness Month in November, you’re part of a global team thousands strong. Get your awareness-raising juices flowing and your how-to questions answered with this interactive webinar.

www.PHAssociation.org/AwarenessMonth2012

Presenters: Elisabeth Williams, PHA's Grassroots Campaigns Manager; Jessica McKearin, PHA's Director of Special Events; Ellen Leoni, PHA's Development Associate

Register now

Thu, Sep 20, 2012
3:00 p.m. ET
Webinar (Phone AND Internet)

Would you like to see more stories about pulmonary hypertension in the media? With advice and materials from PHA, you, and PH, can make the news. PH patient Jeannette Morrill and Mollie Katz, PHA’s Vice President of Community Engagement, will share strategies for catching journalists' attention and getting media coverage.

Extra Resources: PHA’s Online Media Guide www.PHAssociation.org/Awareness/MediaGuide

Presenters: Elisabeth Williams, PHA's Grassroots Campaigns Manager; Mollie Katz, PHA's Vice President, Community Engagement; Jeannette Morrill, PHAware Campaign Member

Register now

Wed, Aug 29, 2012
2:00 p.m. ET
Webinar (Phone AND Internet)  

Applying for Social Security Disability benefits can be challenging, but preparation and the right documents can make it easier. Join Amy Jackson of the Caring Voice Coalition and Charlotte McCabe, a PH patient and successful SSD applicant, for tips on the process—from deciding to apply to what to do if you receive a denial.

Presenters: Amy Jackson, Insurance Education and Counseling Team Coordinator at Caring Voice Coalition, Inc.; Charlotte McCabe, Support Group Leader

Register now

Friday, July 13
2:00 p.m. ET
Webinar (Phone AND Internet)

"Sometimes the reason a Member of Congress hasn't signed onto a bill is simply because no one has ever asked. If someone took the time to visit about a bill, then that means it's important to them." -Sara Mabry, Legislative Aide to Senator Robert Casey (D-PA)

Direct contact from a constituent is the most common reason for a Member of Congress to support PH initiatives. This August, Congress will go into recess and your senators and representative will return to their states to meet face-to-face with their constituents about the issues that matter to them. Take advantage of this golden opportunity to meet with your Members of Congress to urge them to cosponsor the only PH specific bill in Congress, the Tom Lantos Pulmonary Hypertension Research and Education Act.

During this webinar, you'll get expert advice and tips from Dane Christiansen, PHA's Washington Representative. Plus you'll hear from PH advocate Steph Layer about how she makes the most of district visits.

Presenters: Dane Christiansen, PHA's Washington Representative; Steph Layer, PH Patient and Support Group Co-Leader

Register now

Tuesday, July 17
3:00 p.m. ET
Webinar (Phone AND Internet)

If you or someone you know was recently diagnosed with pulmonary hypertension, please join us on Tuesday, July 17 at 3 p.m. ET for a webinar especially designed for newly diagnosed patients. This webinar will provide a roadmap to help you gather information and make decisions in the weeks and months to come.

Facilitator, Maribeth Duncan, ANP-BC , will review the basics of what every pulmonary hypertension patient should know about PH, treatment and coping with this disease.

Presenter: Maribeth Duncan, ANP-BC, Barnes-Jewish Hospital

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Considering transplantation can be challenging and stressful. In addition to your questions and concerns, you may experience many emotions when your doctor begins discussing transplant as an option. During this webinar, Allyson Rupp discusses the emotional impacts of undergoing a transplant evaluation, the psychological impacts of receiving a transplant and answers questions about coping during the transplant process.

Presenter:

• Allyson Rupp, LCSW, Vera M. Wall Center for Pulmonary Vascular Diseases Stanford Hospital and Clinics

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When your child has PH, even simple medical procedures may be more complicated. Brian Hanna, MDCM, PhD and Steve Walker, MS, CRNP of The Children's Hospital of Philadelphia discuss issues around anesthesia and surgery, the things to ask before PH kids undergo medical procedures, and offer recommendations on being prepared for an emergency situation.

Presenters:

• Brian Hanna, MDCM, PhD
• Stephen H. Walker, MS, CRNP

Watch event recording

Medical research shows that participating in a creative outlet - whether it be writing, painting, photography, etc. - can lead to improved physical, mental and emotional health. View this webinar to learn more about the benefits that creative endeavors can bring to your physical and mental wellbeing as caregivers. This webinar included open time for attendees to ask questions and share their own creative outlets with the group.

Presenters:

• Nancy Leaman
• Christina Doak

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It is an exciting time for PAH research. Over the past 17 years, many PAH therapies have been approved by the FDA! In this session, learn about the treatments that are currently available and treatments in the pipeline.

Presenter:

• Michael McGoon, MD, Mayo Clinic

Watch event recording

How do you know when you or someone you love is feeling blue versus feeling depressed? It can be tough to tell. What we do know is that the rates of depression for those living with chronic illness and their care providers tend to be higher than the general population. Being able to recognize depression is the first step in learning to manage it. This webinar focuses on recognizing the signs of depression, as well as strategies for coping with depression, sadness, and stress.

Presenter:

• Ginny Maril, MPsy, Texas Woman's University

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Whether by plane, car, bus or train, traveling with PH can be tricky for families. This webinar will give you the tips you need for a planning smooth vacations - whether it’s across the country or around town!

Presenters:

• Michelle Calderbank, RN, BSN, Children's Hospital Colorado
• Jennifer Wisniewski, RN, BSN, Children's Hospital Colorado

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Medical research links creativity with reduced symptoms and improved health. In this second in the creativity webinar series, active bloggers Leigh McGowan and Colleen Schnell discuss their experiences with blogging as a form of creative self-expression. Learn blogging tips and tricks and find out more about the online PH blogging community.

Presenters:

• Leigh McGowan
• Colleen Schnell

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After diagnosis, many patients experience difficulties adjusting to a changing lifestyle. Despite these challenges, patients can find ways to stay active, whether that be through exercising, advocacy or being with friends and family. In this webinar, hear from medical professionals and patients about the different ways you can stay active with PH and how to maintain energy to continue doing the things you love.

Presenters:

• Abby Poms, RRT, Duke University Medical Center
• Hannah Lahmeyer
• Melanie Kozak
• Rebecca H. Crouch, PT, DPT, CCS, FAACVPR

Watch event recording

The cause continues to move forward in many directions and 2011 was a year of continuing strength in the fight against PH through research, education, advocacy and awareness. In this webinar, listen as PHA's President, Rino Aldrighetti, discusses the current state of the PHA and the growth of the PH community. He will also review PHA's recent accomplishments and goals for the new year.

Presenter:

• Rino Aldrighetti, PHA's President and CEO

Watch event recording

Relationships are an important part of life for everyone, especially PH patients. A diagnosis of PH does not mean that relationships have to end, but in most cases, your relationships will change during your PH journey. During this webinar, learn how you can maintain healthy and fulfilling relationships with your friends, spouse or partner and other family members post-diagnosis.

Presenter:

• Ginny Maril, MPsy, Texas Woman's University

Watch event recording

If you or someone you know was recently diagnosed with pulmonary hypertension, listen to this webinar especially designed for newly diagnosed patients. This webinar provides a roadmap to help you gather information and make decisions in the weeks and months following diagnosis. Facilitator, Lisa L. Roessel, FNP-BC, reviews the basics of what every pulmonary hypertension patient should know about PH, treatment and coping with this disease.

Presenter:

• Lisa Roessel, FNP-BC, Legacy Pulmonary Clinic

Watch event recording

Monday, February 6
2:00 p.m. ET
Webinar (Phone AND Internet)

The cause continues to move forward in many directions and 2011 was a year of continuing strength in the fight against PH through research, education, advocacy and awareness. In this webinar, listen as PHA's President, Rino Aldrighetti, discusses the current state of the PHA and the growth of the PH community. He will also review PHA's recent accomplishments and goals for the new year.

Presenter: Rino Aldrighetti, PHA's President and CEO

Register now

Do you see a challenge in the PH community and have an idea for how to solve it? A Lantos Community Service Award can provide you with money and support to make your idea a reality.

For example, when Katie Grace Groebner began IV treatment for her PH at age 5, she needed a bag for her pump. Her mom's search for a child-appropriate bag led to a search for something that would make living with PH easier for young PHers everywhere and eventually to a Lantos Community Service Award.

Learn more about how to get support for your idea during this webinar with PHA staff. Award winners may even receive a $1,000 scholarship for PHA's International Conference!

Learn more about Lantos Community Service Awards

Presenter:

• Mollie Katz, PHA's Vice President Community Engagement

Watch event recording

Listen to this informational overview of the PHA Special Event planning process, including how to get started, tips and timelines. We discuss available resources, including our online Event Organizer Resource Center, using Facebook to promote your event and updates on using FirstGiving for online registration and fundraising.

Presenters:

• Jessica McKearin, PHA's Associate Director of Special Events
• Leslie Mahaney, PHA's Special Events Program Associate

Watch event recording

Wednesday, January 25
2:00 p.m. ET
Webinar (Phone AND Internet)

Relationships are an important part of life for everyone, especially PH patients. A diagnosis of PH does not mean that relationships have to end, but in most cases, your relationships will change during your PH journey. During this webinar, we will discuss how you can maintain healthy and fulfilling relationships with your friends, spouse or partner and other family members post-diagnosis.

Presenter: Ginny Maril, MPsy

Register now

Monday, January 23
4:00 p.m. ET
Webinar (Phone AND Internet)

If you or someone you know was recently diagnosed with pulmonary hypertension, please join us on Monday, January 23 at 4 pm EST for a webinar especially designed for newly diagnosed patients. This webinar will provide a roadmap to help you gather information and make decisions in the weeks and months to come.

Facilitator, Lisa L. Roessel, FNP-BC, will review the basics of what every pulmonary hypertension patient should know about PH, treatment and coping with this disease.

Presenter: Lisa Roessel, FNP-BC

Register now

Wednesday January 18
8:00 p.m. ET
Webinar (Phone AND Internet)

You can help the PH community breathe a little easier! Do you see a challenge in the PH community and have an idea for how to solve it? A Lantos Community Service Award can provide you with money and support to make your idea a reality.

For example, when Katie Grace Goebner began IV treatment for her PH at age 5, she needed a bag for her pump. Her mom's search for a child-appropriate bag led to a search for something that would make living with PH easier for young PHers everywhere and eventually to a Lantos Community Service Award.

Learn more about how to get support for your idea during this live webinar with PHA staff. Award winners may even receive a $1,000 scholarship for PHA's International Conference!

Learn more about the Lantos Community Service Awards

Presenter: Mollie Katz, PHA's Vice President of Community Engagement

Register now

Thursday, January 12
3:00 p.m. ET
Webinar (Phone AND Internet)

Let’s get the ball rolling for an event-ful 2012! Now is the perfect time to start planning a Spring special event. To help get you started, this webinar will provide an overview of planning a PHA special event and the PHA resources available to help you along the way.

Presenters: Jessica McKearin, PHA's Associate Director of Special Events and Leslie Mahaney, PHA's Special Events Program Associate

Register now

Listen as five of the nation's leading pulmonary arterial hypertension (PAH) physicians present groundbreaking data from the REVEAL Registry about trends in PAH patient care. This research suggests that despite a range of available therapies, patients in the United States still experience significant delays in diagnosis. Panelists discuss the need for early diagnosis of PAH and more of the latest research recommendations to improve patient outcomes.

This Pulmonary Hypertension (PH) Awareness Month webinar was hosted as part of a partnership between the Pulmonary Hypertension Association and the American Thoracic Society in recognition of Pulmonary Hypertension Week at the ATS.

The REVEAL Registry is a multicenter, observational research study of PAH patients. Over 3,500 patients are enrolled in the U.S.-based registry, making it the largest PAH study in the world.

Presenters:

• C. Gregory Elliot, MD, Intermountain Medical Center (Facilitator)
• David Badesch, MD, University of Colorado Denver
• Lynn Brown, MD, Intermountain Medical Center
• Richard Channick, MD, Massachussets General Hospital
• Vallerie McLaughlin, MD, University of Michigan Ann Arbor

Watch event recording

Thursday, November 10
3:00 p.m. ET
Webinar - phone AND web login

Join five of the nation's leading PAH physicians on Thursday, November 10, as they present groundbreaking data from the REVEAL Registry about trends in PAH patient care. This research suggests that despite a range of available therapies, patients in the United States still experience significant delays in diagnosis. Panelists will discuss the need for early diagnosis of PAH and more of the latest research recommendations to improve patient outcomes.

This PH Awareness Month webinar is a partnership between the Pulmonary Hypertension Association and the American Thoracic Society in recognition of Pulmonary Hypertension Week at the ATS, November 6-12. The presentation is open to all, but will be of special interest to medical professionals and PAH patients and caregivers.

The REVEAL Registry is a multicenter, observational research study of PAH patients. Over 3,500 patients are enrolled in the U.S.-based registry, making it the largest PAH study in the world.

Presenters: C. Gregory Elliot, MD, Intermountain Health Center (Facilitator); Vallerie McLaughlin, MD, University of Michigan; Lynn Brown, MD, PhD, Intermountain Health Center; Richard Channick, MD, Massachusetts General Hospital; David Badesch, MD, University of Colorado at Denver

Register now

During this call, Amanda Harvey-McKee and Brit Riggins share their experiences with telling their PH stories and tips for helping others understand PH whether they be family members, friends or coworkers. They also discuss strategies for explaining limitations and communicating about PH.

Presenters:

• Amanda Harvey-McKee, St. Louis Support Group Leader
• Britt Riggins, Generation Hope Advisory Board

Watch event recording

Tuesday, August 30
3:30 p.m. ET
Webinar - phone AND web login

Spread Generation Hope’s message of hope and optimism while raising PH awareness in communities all over the world. How? By connecting with the media! Join Kimberlee Ford, Generation Hope member, PHAware Campaign member and support group leader, and Elisabeth Williams, PHA’s Grassroots Campaigns Associate, to learn about the advantages of working with the media and how to effectively share your personal PH journey with reporters.

Supported by the Centers for Disease Control and Prevention

Presenters: Elisabeth Williams, PHA's Grassroots Campaigns Associate and Kimberlee Ford, Support Group Leader, Generation Hope Member and PH Awareness Raiser

Thursday, Sept. 1
6:00 p.m. ET
Webinar - phone AND web login

On this call, Amanda Harvey-McKee and Brit Riggins will share their experiences with telling their PH stories and tips for helping others understand PH whether they be family members, friends or coworkers. They will also discuss strategies for explaining limitations and communicating about PH. Please come with your own tips, suggestions and any questions you might have.

Presenters: Amanda Harvey-McKee and Brit Riggins

Register now

Hear from experts at Caring Voice Coalition and other parents about how to overcome some of the challenges of getting – and then keeping – coverage for your child. Whether your child is 5 or 25, come ready to listen to these parents' questions and suggestions!

Presenters:

• Amy Jackson, Insurance Education and Counseling (IEC) Team Coordinator, Caring Voice Coalition, Inc. (CVC)
• Miranda G. James, Attorney at Law, Caring Voice Coalition, Inc.

Watch event recording

When PHers meet face-to-face with Members of Congress, we make a BIG impression and get great results for the PH community. This webinar featured PHA’s Washington Representative, Gavin Lindberg, in a discussion about meeting face-to-face with senators and representatives near where you live. PHA advocates who have visited face-to-face with their Members of Congress in the past will also be on hand to share tips and advice.

Presenters:

• Gavin Lindberg, PHA's Washington Representative; Vice President, Health and Medicine Counsel of Washington
• Katie Kroner, PHA's Director of Advocacy and Awareness

Watch event recording

Learn the ins and outs of utilizing social media, soliciting sponsorship, marketing and hear many more pieces of advice for your fundraising event! First-time organizers, veteran planners and everyone in between are encouraged to watch!

Presenters:

• Jessica McKearin, PHA's Associate Director of Special Events
• Jenna Roe, PHA's Special Events Program Associate
• Amy Moseley, Spur a Cure for PH
• Missy Godina, Walk 2 Cure PH: The Ellie Godina Memorial Walk
• Joanne Schmidt, The 7th Annual New York Fun Walk

Watch event recording

Wednesday, July 13
3:30 p.m. ET
Webinar - phone AND web login

Are you on Facebook? If so, this is the webinar for you! PHA’s Grassroots Campaigns Associate Elisabeth Williams and PHA community member Colleen Brunetti will talk about how to use social networking sites to take action in support of pulmonary hypertension research and education. PHA’s Development Manager Jennifer Kaminski and PHA community member Lucia Martuccio will discuss how you can go beyond Facebook to make a bigger impact and raise more funds using PHA’s easy online tools.

This webinar will go beyond our earlier webinar, “Using the Web to Fight Against PH”, which you can find in our Fight the Cause Online section, along with other great resources.

Presenters: Elisabeth Williams, PHA's Grassroots Campaigns Associate; Colleen Brunetti; Jennifer Kaminski, PHA's Development Manager; Lucia Martuccio

Register now

Thursday, June 2
3:00 p.m. ET
Webinar - phone AND web login

Learn the ins and outs of utilizing social media, soliciting sponsorship, marketing and many more pieces of advice for your fundraising event! First-time organizers, veteran planners and everyone in between are encouraged to sign up!

Presenters: Jessica McKearin, PHA's Associate Director of Special Events; Jenna Roe, PHA's Special Events Program Associate; Trish Duque, Spur a Cure for PH; Missy Godina, Walk 2 Cure PH: The Ellie Godina Memorial Walk and Joanne Schmidt, The 7th Annual New York Fun Walk

Register now

Wednesday, May 18
2:30 p.m. ET
Webinar - phone AND web login

PHA on the Road: PH Patients and Families Education Forum is only a month away! If you are registered at one of the four cities or thinking of attending, you won’t want to miss this live e-learning event. During this webinar, PHA staff members Suzanne Flood and Meghan Finney will walk you through the schedule of the day with an overview of the program, updates on any changes and time for questions and answers.

Presenters: Suzanne Flood, PHA's Marketing & Communications Associate and Meghan Finney, PHA's Patient Education Program Associate

Register now

In March 2010, the Affordable Care Act (ACA) was signed into law, drastically changing the healthcare industry in the United States. Although many of the changes will require up to 10 years to completely implement, the PH community has already started to feel the effects of the new law.

Listen as Gavin Lindberg, PHA’s Washington Representative, explains what provisions are included in the ACA, how these changes have already affected the PH community, and what to expect over the upcoming months and years.

Presenters:

• Gavin Lindberg, PHA's Washington Representative
• Margaret Beardsworth, PHA's Insurance Program Manager
• Katie Kroner, PHA's Director of Advocacy and Awareness

Watch event recording

Monday, May 2
3:30 p.m. ET
Webinar -phone AND web login

In March 2010, the Affordable Care Act (ACA) was signed into law, drastically changing the healthcare industry in the United States. Although many of the changes will require up to 10 years to completely implement, the PH community has already started to feel the effects of the new law.

Join Gavin Lindberg, PHA’s Washington Representative, as he explains what provisions are included in the ACA, how these changes have already affected the PH community, and what to expect over the upcoming months and years.

Presenters: Gavin Lindberg, PHA's Washington Representative; Margaret Beardsworth, PHA's Insurance Program Manager; Katie Kroner, PHA's Director of Advocacy and Awareness

Register now

Working with insurance companies to get coverage for critical tests and PH therapy can be an uphill battle, whether you are a PH patient or PH-treating medical professional. Fortunately, there are resources to help you advocate for PH therapy coverage.

In this webinar, Toni Heininger, Health Project Coordinator at University of Rochester, and Margaret Beardsworth, PHA’s Insurance Program Manager, highlight common insurance problems and tips for confronting and educating insurance companies.

Both PH patients and allied health professionals are encouraged to watch this webinar.

Presenters:

• Toni Heininger, Health Project Coordinator, University of Rochester
• Margaret Beardsworth, PHA’s Insurance Program Manager

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Join Environics Communications and learn how to use the media to your advantage when raising awareness in your community. Get tips on spotting media opportunities, pitching your story, giving an interview and more!

Presenters:

• Elisabeth Williams, PHA's Grassroots Campaigns Associate
• Jeff White, Guest Panelist from Environics Communications
• Hillarie B. Turner, Guest Panelist from Environics Communications

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As research in pulmonary hypertension grows, we may find more ways to diagnosis, treat and ultimately cure the disease. Recently, Dr. Sebastien Bonnet of Laval University in Quebec, Canada, made the exciting discovery of the PIM-1 protein; a protein virtually unseen in normal patients, but seen in patients with pulmonary hypertension in amounts relative to the severity of the disease. With positive implications both for early diagnosis and treatment, the discovery of the PIM-1 provides more insight into the disease. In this webinar, Dr. Sebastien Bonnet will discuss his research and the relationship between PIM-1 and pulmonary hypertension.

Presenter:

• Sébastien Bonnet, PhD, Laval University, Quebec, Canada

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Monday, March 28
3:00 p.m. ET
Webinar - phone AND web login

Join Environics Communications and learn how to use the media to your advantage when raising awareness in your community. Get tips on spotting media opportunities, pitching your story, giving an interview and more!

Presenters: Elisabeth Williams, PHA's Grassroots Campaigns Associate; Jeff White and Hillarie B. Turner, Guest Panelists from Environics Communications

Register now

Friday, March 25
2:00 p.m. ET
Webinar - phone AND web login

As research in pulmonary hypertension grows, we may find more ways to diagnosis, treat and ultimately cure the disease. Recently, Dr. Sebastien Bonnet of Laval University in Quebec, Canada, made the exciting discovery of the PIM-1 protein; a protein virtually unseen in normal patients, but seen in patients with pulmonary hypertension in amounts relative to the severity of the disease. With positive implications both for early diagnosis and treatment, the discovery of the PIM-1 provides more insight into the disease. In this webinar, Dr. Sebastien Bonnet will discuss his research and the relationship between PIM-1 and pulmonary hypertension.

Presenter: Sébastien Bonnet, PhD, Laval University, Quebec, Canada

Register now

The cause continues to move forward in many directions. 2010 was a year of continuing growth and strength in the fight against PH. In this webinar, hear from PHA’s President, Rino Aldrighetti, on PHA's recent accomplishments and our goals for this year!

Presenter:

• Rino Aldrighetti, PHA's President and CEO

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Wednesday, February 23
2:00 p.m. ET
webinar - phone AND web login

The cause continues to move forward in many directions. 2010 was a year of continuing growth and strength in the fight against PH. In this webinar, you will hear from PHA’s President, Rino Aldrighetti, on PHA's recent accomplishments and what we expect to achieve this year. Don’t miss it!

Presenter: Rino Aldrighetti, PHA's President and CEO

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Session recording from PHA's 2010 International PH Conference

This session will discuss both newly diagnosed mild PAH and improved PAH on existent therapy. Evidence for prevention and treatment will be highlighted.

Panelists:

• Hap Farber, MD, Boston University, Boston, Mass., chair
• Ioana Preston, MD, Tufts University School of Medicine, Boston, Mass.
• Melisa Wilson, ARNP, ACNP-BC, Orlando Heart Center, Orlando, Fla.
• David Badesch, MD, University of Colorado Denver, Denver, Colo.

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Session recording from PHA's 2010 International PH Conference

This session will review the who, when, and what procedure for lung transplant in the setting of PH. The updated lung allocation scoring system for transplant will be discussed, along with atrial septostomy and thromboendarterectomy.

Panelists:

• Sean Studer, MD, MS, FCCP, Newark Beth Israel Medical Center, Newark, N.J., chair
• M. Patricia George, MD, University of Pittsburgh, Pittsburgh, Penn.
• Jeffrey Edelman, MD, University of Washington Medical Center, Seattle, Wash.

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Session recording from PHA's 2010 International PH Conference

This session will cover the phosphodiesterase inhibitors (PDE-5 inhibitors) and their role in the treatment of pulmonary arterial hypertension. The mechanism of action of these drugs will be briefly discussed, as well as their potential benefits and associated risks. The evidence supporting their use will be briefly presented.

Panelists:

• David Badesch, MD, University of Colorado Denver, Denver, Colo., chair
• James Tarver, III, MD, Florida Hospital, Orlando, Fla.
• Joy Beckmann, RN, MSN, Harbor-UCLA Medical Center, Torrance, Calif.
• Ioana Preston, MD, Tufts University School of Medicine, Boston, Mass.

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Session recording from PHA's 2010 International PH Conference

Las siguientes sesiones tienen como objective entender el manejo actual de la Hipertensión Pulmonar. Se discutirán las opciones de intervención como son el trasplante pulmonar y la septostomía atrial. De igual forma, se discutirá la terapia de combinación y las nuevas ociones en el futuro cercano.

Panelists:

• Julio Sandoval, MD, National Institute of Cadiology, Mexico City, Mexico, chair
• Gustavo Heresi, MD, Cleveland Clinic, Cleveland, Ohio
• Fernando Torres, MD, UT Southwestern Medical Center, Dallas, Texas

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Session recording from PHA's 2010 International PH Conference

Considering transplant? Hear from patients who have been through this process.

Presenters:

• Angie Eldam
• Karen Lindemann

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Session recording from PHA's 2010 International PH Conference

Get tips from other patients about how to communicate with family and friends about your illness. Learn to say "no" and to talk about your needs and limits.

Presenters: 

• Amanda McKee
• Sheree Rickman
• Marcia Beverly

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Session recording from PHA's 2010 International PH Conference

In the PH community, powerful change begins with a few strong voices. No matter what your experience level or physical ability, you have what it takes to make a difference through legislative advocacy. Expect to leave this session with the knowledge, tools and inspiration to educate and build relationships with your elected officials.

Presenters:

• Gavin Lindberg, PHA's Washington Representative
• Charlotte McCabe, 435 Campaign Member
• Doug Taylor, 435 Campaign Member
• Elisabeth Williams, PHA Grassroots Campaigns Associate

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Planning to organize a fundraiser, but need some additional information and advice? This is the perfect opportunity to find out what it takes to plan a special event and get your questions answered! This panel discussion, featuring three seasoned special event planners, will provide practical advice as it relates to “Event Planning 101.”

Presenters: 

• Jessica McKearin, PHA's Associate Director of Special Events
• Jenna Roe, PHA's Special Events Program Associate
• Carol Lindstrom, PHenomenal Hope for a Cure, Omaha, Neb.
• Katy Hayes, Pulmonary Pints Pub Crawl, Baltimore, Md.
• Jen Broderick-Anderson, Abby’s Road PHun Walk, Albuquerque, N.M.

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It is an exciting time for PAH research. Over the past 13 years, eight PAH therapies have been approved by the FDA! In this session, learn about the new treatments available and treatments currently in the pipeline.

Presenter:

• Michael D. McGoon, MD, Mayo Clinic, Rochester

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Learn how to get the most out of time-limited medical appointments. Deborah Levine, MD, will discuss strategies for communicating effectively with medical professionals, and methods for opening the channels of communication between your primary care provider, PH team and other specialists.

Presenter:

• Deborah Levine, MD, University of Texas Health Science Center at San Antonio

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Want to meet another pulmonary hypertension patient in your town or region? Not sure where to start looking? PHA can help you find other patients and bring them together to start a dialogue of support and education. At its simplest, a support group can be defined as two or more people. We’re sure we can help you find at least another patient, if not more, to meet face to face for support.

Presenters:

• Debbie Castro, PHA's Volunteer Services Director
• Sophie Klein, PHA's Volunteer Services Program Associate

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Session recording from PHA's 2010 International PH Conference

How does congenital heart disease lead to PH? What are the options for patients who have developed PH in conjunction with congenital heart disease? This session will focus on the various forms of congenital heart disease that might lead to PH and look at the options available to patients. We will review the known medical therapies for PH with congenital heart disease, and discuss when patients should consider PH medicines.

Panelists: 

• Jeffrey Feinstein, MD, Stanford University, Stanford, Calif. (Chair)
• Robyn Barst, MD, Columbia University, New York, N.Y.
• Delphine Yung, MD, Seattle Children’s Hospital, Seattle, Wash.

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Session recording from PHA's 2010 International PH Conference

The role and prominence of the "left heart" as a cause of pulmonary hypertension will be discussed, as will the contribution of obesity and sleep-disordered breathing to PH. We will also address clinical clues and non-invasive testing, such as echo-doppler, that can help differentiate the "left heart" patient from patients with pulmonary vascular disease.

Panelists:

• Paul Forfia, MD, Hospital of University of Pennsylvania, Philadelphia, Penn. (Chair)
• Francois Haddad, MD, Stanford University, Stanford, Calif.
• Ronald Oudiz, MD, Harbor-UCLA Medical Center, Torrance, Calif.
• Joan Zhang, CRNP, MSN; University of Pittsburgh, Pittsburgh, Penn.

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Session recording from PHA's 2010 International PH Conference

Both patients with PAH and their family members often describe the experience of living with PAH as being akin to a roller coaster: Lots of ups and downs. How do we ride this coaster without getting derailed? This session will focus on strategies for maintaining physical and emotional well-being in the context of pulmonary hypertension.

Panelists: 

• Ronald Oudiz, MD, Harbor-UCLA Medical Center, Torrance, Calif. (Chair)
• Deborah McCollister, RN, BSN, University of Colorado Denver, Aurora, Colo.
• Hubert Chen, MD, MPH, University of California San Francisco, San Francisco, Calif.
• Darren Taichman, MD, PhD, University of Pennsylvania, Philadelphia, Penn.

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Session recording from PHA's 2010 International PH Conference

Whether you're going to the ball game or to Bermuda, a little planning can take the stress and what-ifs out of traveling with PH. Includes the current regulations regarding traveling with oxygen.

Presenters:

• Ann Arnott
• Evelyn Crespo
• Ellen Harris
• Angel Gorman, Lincare

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Session recording from PHA's 2010 International PH Conference

A discussion about making the most out of college, about choosing a career, traveling, dating, and more.

Presenters:

• Lindsay Nicol
• Emily Mitchell
• Carson Smith
• Sean Wyman

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If you or someone you know was recently diagnosed with pulmonary hypertension, this free webinar is for you. Louise Durst, RN, has been working with pulmonary hypertension patients for nearly two decades. During this call, she reviews the basics of what every pulmonary hypertension patient should know about PH, treatment and coping with this disease.

Presenter:

• Louise Durst, RN, Research and Study Coordinator, Cardiovascular Research Unit at Mayo Clinic Medical Center, Rochester

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Tuesday, Feb 1
3:30 p.m. ET
Webinar - web AND phone login

It is an exciting time for PAH research. Over the past 13 years, eight PAH therapies have been approved by the FDA! In this session, with Dr. McGoon of Mayo Clinic, learn about the new treatments available and treatments currently in the pipeline.

Presenter:Michael McGoon, MD, Professor of Medicine, Mayo Clinic, Rochester

Register now

Thursday, Feb. 3
3:00 p.m. ET
Webinar - web AND phone login

Planning to organize a fundraiser, but need some additional information and advice? This is the perfect opportunity to find out what it takes to plan a special event and get your questions answered! This panel discussion, featuring three seasoned special event planners, will provide practical advice as it relates to “Event Planning 101.”

Presenters: Jessica McKearin and Jenna Roe, PHA and Carol Lindstrom, PHenomenal Hope for a Cure; Katy Hayes, Pulmonary Pints Pub Crawl; Jen Broderick-Anderson, Abby’s Road PHun Walk 

Register now

Wednesday, Jan. 26
12:00 p.m. ET
Webinar - web AND phone login

Learn how to get the most out of time-limited medical appointments. Deborah Levine, MD, will discuss strategies for communicating effectively with medical professionals, and methods for opening the channels of communication between your primary care provider, PH team and other specialists.

Presenter: Deborah Levine, MD, University of Texas Health Science Center at San Antonio

Register now

Tuesday, Jan. 25
8:00 p.m. ET
Webinar - web AND phone login

Want to meet another pulmonary hypertension patient in your town or region? Not sure where to start looking? PHA can help you find other patients and bring them together to start a dialogue of support and education. At its simplest, a support group can be defined as two or more people. We’re sure we can help you find at least another patient, if not more, to meet face to face for support.

Presenters: Debbie Castro, PHA's Director of Volunteer Services; Sophie Klein, Volunteer Services Program Associate

Register now

Wednesday, Jan. 19
1:00 p.m. ET
Webinar - web AND phone login

If you or someone you know was recently diagnosed with pulmonary hypertension, this free webinar is for you. Louise Durst, RN, has been working with pulmonary hypertension patients for nearly two decades. During this call, she reviews the basics of what every pulmonary hypertension patient should know about PH, treatment and coping with this disease.

Presenter: Louise Durst, RN, Research Nurse and Study Coordinator, Cardiovascular Research Unit, Mayo Clinic Medical Center

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Session recording from PHA's 2010 International PH Conference

In this potpourri session, we will welcome questions about any topic and encourage questions that don't easily fit into the other medically led sessions. We may not know the answer, but you shouldn't be afraid to ask us anything! (We'll even talk about sex…) The panelists have a combined 50 year history in pulmonary hypertension, and each is actively engaged in different areas of PH research.

Panelists:

• James White, MD, PhD, University of Rochester, Rochester, N.Y. (Chair)
• Todd Bull, MD, University of Colorado Denver, Denver, Colo.
• James Loyd, MD, Vanderbilt University, Nashville, Tenn.
• Juliana Liu, ANP, Stanford University, Stanford, CA

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Session recording from PHA's 2010 International PH Conference

We will discuss the issues around anesthesia, surgical procedures and the simple things to ask before PH kids undergo procedures. We will be ready to discuss everything from dental work to lung transplantation.

Panelists:

• Brian Hanna, MD, PhD, Children’s Hospital of Philadelphia, Philadelphia, Penn. (Chair)
• Stuart Berger, MD, The Medical College of Wisconsin, Milwaukee, Wis.
• Jacqueline Szmuszkovicz, MD, Children’s Hospital Los Angeles, Los Angeles, Calif.
• Stephen Walker, MS, RN, CPNP, Children’s Hospital of Philadelphia, Philadelphia, Penn.

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Session recording from PHA's 2010 International PH Conference

This session will focus on the role of regimented exercise in patients with pulmonary hypertension. We will set aside ample time to take questions from the audience about their exercise habits and goals.

Panelists:

• Roham Zamanian, MD, FCCP, Stanford University, Stanford, Calif. (Chair)
• Nicholas Hill, MD, Tufts Medical Center, Boston, Mass.
• Rajeev Saggar, MD, David Geffen School of Medicine at UCLA, Los Angeles, Calif.
• Barbara Smithson, RN, MSN, Rhode Island Hospital, Providence, R.I.

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Session recording from PHA's 2010 International PH Conference

Chronic Thromboembolic Pulmonary Hypertension (CTEPH) is a progressive disease that can result in severe shortness of breath and disability. It also appears to be more common than previously realized. Unlike most other causes of pulmonary hypertension, CTEPH is often cured with surgery (pulmonary endarterectomy); although very few centers perform this procedure. We will discuss the diagnosis and medicinal and surgical treatment of CTEPH with a particular focus on treatment and outcomes.

Panelists:

• Nick H. Kim, MD, University of California, San Diego, La Jolla, Calif. (Chair)
• Richard Channick, MD, Massachusetts General Hospital, Boston, Mass.
• Victor Test, MD, University of California, San Diego, La Jolla, Calif.

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Session recording from PHA's 2010 International PH Conference

Your diet can affect PH in several ways. Examples include sodium and fluid restriction to manage heart failure, maintaining your ideal body weight and foods that interact with medications. Many patients have questions about the use of nutritional supplements, vitamins and herbs to help treat PH.

Panelists:

• Glenna Traiger, RN, MSN, University of California Los Angeles, Los Angeles, Calif. (Chair)
• Kari Ehringer, PharmD, Accredo, San Diego, Calif.
• Lisa Kinder, RD, CNSD, Critical Care Systems, Tustin, Calif.

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Session recording from PHA's 2010 International PH Conference

 Learn to prioritize your daily needs, conserve energy and reduce stress.

Panelists:

• Mark Arellano (chair)
• April Scheppe
• Rita Orth, RN

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Session recording from PHA's 2010 International PH Conference

Prostacyclins are highly effective medications for treating PAH. In the past, prostacyclins had to be given directly through a catheter into a vein or under the skin. There are now two prostacyclins FDA-approved for use, the inhaled route (iloprost and treprostinil) and two oral prostacyclins being studied (treprostinil and beraprost). This session will review the safety and benefits of inhaled prostacyclins and outline the current research on oral prostacyclins.

Panelists:

• Richard Channick, MD, Massachusetts General Hospital, Boston, Mass. (Chair)
• Christine Archer-Chicko, CRNP, Penn Presbyterian Medical Center, Philadelphia, Penn.
• Harold Palevsky, MD, Penn Presbyterian Medical Center, Philadelphia, Penn.
• Roham Zamanian, MD, FCCP, Stanford University, Stanford, Calif.

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Session recording from PHA's 2010 International PH Conference

In this session, we will review the characteristics of scleroderma and pulmonary hypertension, focusing on the multiple ways scleroderma causes PH and the impact of the involvement of other organs, such as the heart, kidneys and muscles. Our multi-disciplinary panel, including specialists in pulmonology, rheumatology and cardiology, will discuss recent developments in the treatment of this disease and answer questions from the audience.

Panelists:

• Virginia Steen, MD, Georgetown University, Washington, D.C (Chair)
• Mary Bartlett, NP, Winthrop Pulmonary Hypertension Center, Farmingdale, N.Y.

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Session recording from PHA's 2010 International PH Conference

Esta sesión es primordialmente para las personas de habla hispana que desean adquirir conocimiento sobre las terapias que se usan en el presente, en el tratamiento de la Hipertensión Pulmonar; principalmente serán discutida las aprobadas por el FDA y las normas médicas.

Panelists:

• Hector Cajigas, MD, Henry Ford Hospital, Detroit, Mich. (Moderador)
• Tomás Pulido, MD, National Heart Institute, Mexico City, Mexico
• Julio Sandoval, MD, National Institute of Cardiology, Mexico City, Mexico

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Session recording from PHA's 2010 International PH Conference

Important medical research links creative endeavors, such as expressive writing, to reduced symptoms and improved health. This session will provide you with ideas, prompts and tips regarding writing for your own health, as well as guidelines and considerations when writing for Pathlight.

Panelists: 

• Sylvia Earley, volunteer copy editor for Pathlight
• Megan Mallory, PHA Associate Director of Publications
• Jeannette Morrill, author of Living with Pulmonary Hypertension: 34 Years and Counting…Healing the Mind and Body Through Faith

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Session recording from PHA's 2010 International PH Conference

Learn how PH patients use faith to help them cope.

Panelists:

• Dorothy Olson, PH Patient, Support Line Volunteer, PHA Board of Trustees Emeritus
• Rev. Steve White, PhD, PHA Board of Trustees

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Session recording from PHA's 2010 International PH Conference

A discussion with patients who have lived many years with PH. Learn some of their secrets for leading a fulfilling life.

Presenters:

• Marilyn Clements, PH Patient, Support Group Leader
• Alex Flipse, PH Patient, Support Group Leader
• Cindy Link, PH Patient
• Jeannette Morrill, PH Patient, Support Group Leader, Newly Diagnosed Patient Advisory Board

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Session recording from PHA's 2010 International PH Conference

The Internet can be a powerful tool in the fight against PH. Learn from PHers about how they have successfully used online tools (Facebook, Twitter, PHA's e-tools for e-Advocacy and personal fundraising pages) to raise awareness about PH and funds - all from the comfort of their computer chairs! Then visit the Fight the Cause Online section to get started.

Presenters:

• Stuart Berwick, Facebook advocate
• Laura D'Anna, DrPH, MPA, Web of Friends fundraiser
• Diane Greenhalgh, PHA Director of Web Services
• Pam Pedersen, e-Advocate

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Session recording from PHA's 2010 International PH Conference

This session will give you tips on how to maximize your time and connect with other patients during Conference, and it will show you how to find a local support group or start your own group once you return home. Leave this session with a greater understanding of how to find patients in your community and how you can learn from others to enrich your life.

Presenters:

• Debbie Castro, PHA's Volunteer Services Director
• Alex Flipse, Support Group Leader
• Betty Lou Wojciechowski, Support Group Leader

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For some PH patients, the experience of living with PAH is akin to riding a rollercoaster. This session will focus on strategies to preserve physical and emotional well-being in the context of pulmonary hypertension.

Presenters:

• Stephen Mathai, MD, Johns Hopkins Pulmonary Hypertension Program, Assistant Professor of Medicine, Johns Hopkins University School of Medicine

Watch event recording

Session recording from PHA's 2010 International PH Conference

Do you have a great idea for advancing the PH cause, but lack the funds to implement it? Then applying for a PHA Tom Lantos Innovation in Community Service award might be just right for you. Hear from two of this year's award winners about their unique approaches to making life better for PH patients and family members. Learn how you, too, can write a winning award application. Gilead Sciences, Inc. established this program to support individuals working to improve community education and outreach in the PH community.

Presenters:

• Adrienne Dern, PHA Senior Vice President
• Kathy Groebner, Bears with Back Packs
• Carol Lindstrom, The Angel Project

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Session recording from PHA's 2010 International PH Conference

The goal of this session is to review the standard diagnostic testing used to diagnose and manage patients with pulmonary hypertension. We will review echocardiogram, cardiac catheterization, lab testing and various imaging modalities. We will also discuss exercise testing such as the sixminute walk test.

Presenters:

• Jeffrey Sager, MD, MSC, University of Southern California, Santa Barbara, Calif. (Chair)
• Todd Bull, MD; University of Colorado Denver, Denver, Colo.
• Zorina Schultz, RN, MSN, CCRN, Cottage Health System, Santa Barbara, Calif.
• Darren Taichman, MD, PhD, University of Pennsylvania, Philadelphia, Penn.

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Session recording from PHA's 2010 International PH Conference

We know that vasodilator treatment improves exercise capacity and symptoms in patients with pulmonary hypertension. Besides medical treatments and modifications to lifestyle, there are several nutritional and dietary supplements on the market that claim to reduce leg swelling, enhance breathing and increase exercise capacity in people with pulmonary hypertension and heart failure. This session will help raise greater awareness about various nutritional, herbal and dietary supplements in the context of pulmonary hypertension.

Presenters:

• Myung Park, MD, University of Maryland School of Medicine, Baltimore, Md. (Chair)
• Joshua Breeding, PharmD., BCPS, University of Minnesota Medical Center, Minneapolis, Minn.
• Natalie Kitterman, RN, BSN, CCRP, Intermountain Medical Center, Murray, Utah
• Helena Purl, RN, BSN, CCRC, Baylor College of Medicine, Houston, Texas

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Session recording from PHA's 2010 International PH Conference

The aims of therapy for pediatric patients are unique and advances are occurring over time. This session will focus on treatment strategies and their impact on the patient (age 0-11) and family.

Presenters:

• Juan Alejos, MD, Mattel Children’s Hospital at UCLA, Los Angeles, Calif. (Chair)
• Dunbar Ivy, MD, University of Colorado, Denver, Colo.
• Johnell Mituniewicz, RN, Columbia University, New York, N.Y.
• Delphine Yung, MD, Seattle Children’s Hospital, Seattle, Wash.

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Session recording from PHA's 2010 International PH Conference

We will discuss the challenges of transitioning from pediatric to adult PH care providers, focusing on pre-transition teaching and patient responsibility. We will also talk about how to make the transition smooth for patient, parent and provider.

Presenters:

• Jeffrey Feinstein, MD, MPH, Lucile Packard Children's Hospital, Palo Alto, Calif. (Chair)
• Darci Albrecht, MSW, Lucile Packard Children's Hospital, Palo Alto, Calif.
• Juliana Liu, ANP, Stanford University, Stanford, Calif.
• Michelle Ogawa, RN, CPNP, Lucile Packard Children's Hospital, Palo Alto, Calif.

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Session recording from PHA's 2010 International PH Conference

Medical therapies for PAH are expensive. This session will provide an overview of Medicare, Medicaid and commercial insurance coverage for PAH medications. Panelists will provide information on the prior authorization process and describe funding programs that assist patients with medication co-payments.

Presenters:

• Miranda James, JD, Caring Voice Coalition, Mechanicsville, Va. (Chair)
• Jeremy Feldman, MD, Arizona Pulmonary Specialists, Phoenix, Ariz.
• Doyle Hull, Caring Voice Coalition, Mechanicsville, Va.

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Session recording from PHA's 2010 International PH Conference

Parents share ideas for dealing with the many challenges of raising a teenager with PH.

Presenters:

• Rich Bottini
• Laurie Jeter
• Melissa Johnson
• Bill O'Donnell

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Session recording from PHA's 2010 International PH Conference

Hear from patients and professionals about how to decode your insurance policy and take advantage of the resources at your disposal to get the treatment you need when you need it.

Presenters:

• Karen Frutiger, RN
• Doyle Hull
• Cindy Pickles, RN, BSN
• Jeane Szwarc
• Margaret Beardsworth, PHA's Insurance Program Manager

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Session recording from PHA's 2010 International PH Conference

From the top of Mount Kilimanjaro to the Mississippi River Valley, it is the drive and passion of PHA's hardworking volunteers that makes Special Events so special. PHA Special Events fundraisers are the perfect way to honor the causes near and dear to the PH community: they support essential PH research and PHA patient and family serving programs, all while raising much needed awareness. Benefit from the experience of our current volunteer event planners and learn about the ways PHA can help you host an event of your own.

Presenters:

• Lauren Johnson, Painting a Stroke of PHenomenal Hope, Okla.
• Melissa Johnson, Painting a Stroke of PHenomenal Hope, Okla.
• Bonnie McGoon, Biennial Rochester PHA Gala, Minn.
• Jessica McKearin, PHA Special Events Manager
• Amanda McKee, St. Louis PHA Dinner and Wine-Tasting, Mo.
• Jack Stibbs, CurePH: The Woodlands Crawfish Festival, Texas

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Session recording from PHA's 2010 International PH Conference

The most effective media coverage about PH includes personal stories - your stories. Hear from the experts, media professionals and PHers like you, about the advantages of raising awareness through the media and how you can embrace them.

Panelists:

• Londen Hall, Orange County Register Health Reporter and Healing Living Blogger
• Alicia House, PHAware Campaign Member
• Pam Pedersen, PHAware Campaign Member
• Elisabeth Williams, PHA Grassroots Campaigns Associate

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Thursday, Nov. 18
3:00 p.m. ET
Webinar - web AND phone login

Do you have a great idea for advancing the PH cause, but lack the funds to implement it? PHA has a solution — the Tom Lantos Innovation in Community Service awards program. Even if you don’t consider yourself a grants writer, applying is easy, and PHA’s Senior Vice President Adrienne Dern will show you how.

And you don’t have to take Adrienne’s word for it. 2010 award winners, including Carol Lindstrom, leader of the Nebraska/Western Iowa PHA Support Group, and Kathy Groebner who creates “bears with backpacks,” will be on hand to tell you how you, too, can be an award winner.

The application process is open through Jan. 3, 2011. Don’t miss this opportunity to learn more about the grants program and ask questions of staff and award winners.

Presenters: PHA's Senior Vice President Adrienne Dern and winners of 2010 grant awards

Register now

Thursday, Nov. 11
2:00 p.m. ET
Webinar - phone AND web login

For some pulmonary hypertension patients, the experience of living with PH is akin to riding a rollercoaster. This session will focus on strategies to preserve physical and emotional well-being in the context of pulmonary hypertension.

Presenter: Stephen Mathai, MD, MHS, Johns Hopkins University School of Medicine

Register now

Wednesday, November 10
4:00 p.m. ET
Online Q&A Chat

Questions about Medicare Part D? Now’s your chance to ask the experts before Medicare’s Annual Coordinated Election Period (ACEP) begins on November 15. Join PHA, the Medicare Rights Center (MRC) and Caring Voice Coalition (CVC) in an online chat to discuss how to choose a Medicare Part D plan that works for you or any other Medicare question you have.

Come ready with questions, or, email us your questions ahead of time at Insurance@PHAssociation.org. Any questions that are unanswered at the end of the chat should be redirected to Medicare Rights Center’s hotline at 1-800-333-4114 or to Caring Voice Coalition at 1-888-267-1440.

View resources and register

Session recording from PHA's 2010 International PH Conference

Panelists explain the normal working of the heart and lungs, and discuss in clear layman’s terms what happens to these systems in pulmonary hypertension patients. An overview of the general treatment strategies is also addressed. What you learn here will provide the foundation for focusing your attention on other sessions – and your own situation.

Presenters

• Dana McGlothlin, MD, University of California San Francisco, San Francisco, Calif. (Chair)
• John Newman, MD, Vanderbilt University, Nashville, Tenn.
• Arlene Schiro, MA, CS, NP, Brigham and Women’s Hospital, Boston, Mass.

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Session recording from PHA's 2010 International PH Conference

Panelists will describe how newly approved medications for adults are being used in children.

Panelists

• Dunbar Ivy, MD, University of Colorado Denver, Denver, Colo. (Chair)
• Michelle Bagby, RN, MSN, CNP, Cincinnati Children’s Hospital
• Kim Patterson, RN, MSN, CPNP, Children’s Hospital of Philadelphia, Philadelphia, Penn.

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Session recording from PHA's 2010 International PH Conference

How are patients with liver disease who also have pulmonary hypertension different from other patients with PH? This session focuses on PH related to liver disease, including making an accurate diagnosis of portopulmonary hypertension and discussing the pros and cons of various medical treatment options. The current status of portopulmonary hypertension and liver transplantation consideration are addressed.

Presenters

• Rajan Saggar, MD, David Geffen School of Medicine at UCLA, Los Angeles, Calif. (Chair)
• Anne Marie Karnyski, RN, Mayo Clinic, Rochester, Minn.
• Steven Kawut, MD, MS, University of Pennsylvania School of Medicine, Philadelphia, Penn.

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Session recording from PHA's 2010 International PH Conference

Treatment options for pulmonary hypertension have dramatically expanded with the availability of multiple medications. If one treatment is good, are two better? When should medication be adjusted or switched, and what evidence is available to guide therapy? This session will focus on the rationale for combination therapy, review results of studies of combination therapy and review transition to oral therapy.

Presenters

• Omar Minai, MD, Cleveland Clinic, Cleveland, Ohio (Chair)
• Nancy Bair, RN, MSN, CNS, Cleveland Clinic, Cleveland, Ohio
• Joseph Parambil, MD, Cleveland, OH, Cleveland Clinic
• Namita Sood, MD, FCCP, The Ohio State University, Columbus, Ohio

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Session recording from PHA's 2010 International PH Conference

Learn how to educate yourself about PH and to make your voice heard by getting involved in the legislative process.

Presenters: Raye Bohn, Janet Cecil and Diane Ramirez

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