August 24, 2011

PHA News, Pulmonary Hypertension Association, Empowered by hope
Latest Blog Post from PHA's President

New Resource...

One of the things that is most important at PHA is finding better ways to communicate valuable information to the patients, family members and medical professionals who are the reason for our work. An example of that goal has just been released for caregivers… » Read more

What's In This Issue

» Spotlight On... District Visits
» Get Smart
» Living Better with PH
» PH Community Scoop

» From the PHA News Desk
» Medical Community Bulletin
» Also of Interest
» PH News Headlines

Spotlight On...

District Visit Victories! PHers Share Stories, Build Support

PHers across the country are visiting with their Members of Congress and building support for the Tom Lantos PH Research and Education Act. Read updates and learn how you can get involved. » Read more

Get Smart

Increase PH Awareness and (Generation) Hope in the Media!

Tuesday, Aug. 30, 3:30 p.m. ET, Webinar
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 Generation Hope member and PH awareness-raiser Kimberlee Ford and PHA staff to learn about the advantages of working with the media and how to effectively share your personal PH journey with reporters. » Register now


Telling Your Story: Explaining PH to Family, Friends and Co-workers

Thursday, Sept. 1, 6:00 p.m. ET, Webinar
Join PH patients Amanda Harvey-McKee and Brit Riggins as they share their experiences with telling their PH stories and tips for helping others understand PH. They will also discuss strategies for explaining limitations and communicating about PH. Tips, suggestions and questions are highly encouraged from participants! » Register now

Recordings from Conference 2010 General Sessions Now Available

Want a glimpse of what's in store for the 10th International PH Conference and Scientific Sessions in 2012? Recordings of the general sessions from the 9th International PH Conference in 2010 are now available online! Experience highlights from the last Conference and see why you won’t want to miss Conference 2012. » View recordings
Living Better with PH

Get Down to Business with PH

The Americans with Disabilities Act states that employers may not ask job applicants about the existence or severity of a disability. Employers may ask whether you are able to perform the functions of a job, but must make reasonable accommodations to allow you to perform your job as necessary (such as providing a refrigerator for your medications). » Learn more about workplace rights

PH Community Scoop

PHA Launches Telephone Support Group: Looking for Your Feedback!

At the end of July, PHA hosted our very first patient Telephone Support Group. Now we want to hear from all of you about your needs – whether you attended the call or not. » Take our survey

Our next call is Wednesday, Aug. 31, from 8-9 p.m. ET. To sign up and receive dial-in information, contact


Wanted: Support Line Volunteers

PHA is looking for a few good volunteers to help answer calls on PHA's Patient-to-Patient Support Line. Do you like talking on the phone? Were you diagnosed with PH before 2006? Are you currently unemployed? Do you have a home telephone (landline)? Contact

From the PHA News Desk

Volunteer with PHA

Looking to volunteer with PHA? If you are fluent in Spanish and are interested in volunteering for PHA from the comfort of your own computer, we have the project for you! For more information, email


Sé Voluntario para PHA

¿Quisieras ser voluntario para PHA? Si hablas español fluidamente y estás interesado en hacer trabajo voluntario para PHA desde la tranquilidad de tu propia computadora, ¡tenemos un proyecto para tí! Para más información, mándanos un correo a

Medical Community Bulletin

PHA to Launch New Find a Doctor Directory

On Sept. 1, PHA will launch a new, expanded Find a Doctor Directory, PHA's premier resource for patients seeking PH-treating physicians. Members of PH Clinicians and Researchers (PHCR) have the exclusive opportunity to be listed in this directory. Current PHCR members, update your profiles today (sign-in required) to make sure your full practice information is included. Lapsed members, renew your membership.

Questions? Email


Design and Validation of an Endothelial Progenitor Cell Capture Chip and Its Application in Patients with PAH

Wednesday, Aug. 31, 2:00 p.m. ET, Webinar
Georg Hansmann, MD, PhD, and Shashi Murthy, PhD, discuss the microfluidic device, developed by a group of researchers in Boston, that can test for the number of beneficial circulating endothelial progenitor cells (EPCs) in the blood stream of patients with cardiovascular disease. This technology was used in patient samples taken from PHA’s 2010 International PH Conference. This webinar is for medical professionals. » Learn more and register now

Making the Most of a Legislative Visit

Thursday, Sept. 1, 1:00 p.m. ET, Webinar
Whether you’re planning to attend the PH Professional Network Advocacy Day and want to know what to expect or just looking for tips on effective legislative visits, this webinar is for you! Hosted by Katie Kroner, PHA’s Director of Advocacy and Awareness, this webinar will help make you comfortable with the legislative visit process. » Register now

Building Medical Education in PH Event in Colo.

Wed., Sept. 7, to Sun., Sept. 11, Sedalia, Colo.
The 2011 Grover Conference on Risk Factors in Pulmonary Hypertension will take place in Sedalia, Colo. This year’s conference aims to educate scientists and clinicians on how gender, sex, hormones, obesity and novel genetics can influence pulmonary hypertension. » Learn more

Symposium is One Month Away: There Is Still Time to Register!

Only 80 FREE registrations remain for allied health professionals interested in attending the 2011 PH Professional Network Symposium taking place September 22-24 in Arlington, Va. Attendees will have the chance to network with colleagues, learn about upcoming research in the field of PH and earn up to 11.25 hours of continuing education credit for FREE. » Learn more and register now

Clinical Trial Investigators: Attend a FREE Training!

Clinical trial investigators and their study staff are invited to attend the Investigator Training Program (ITP) taking place Sept. 24-25 in Arlington, Va., immediately following PHPN Symposium. This is a FREE educational program designed by Pfizer and hosted by PHA that aims to help improve the skills required during the trial process. Registration is limited to the first 60 investigators, so register now! » Learn more
Also of Interest

African American Scleroderma Patient Education Day

Saturday, Sept. 24, 2011, Baltimore, Md.
Join the Scleroderma Foundation, Virginia Steen, MD, Georgetown University Medical Center, and Laura K. Hummers, MD, Johns Hopkins University Medical Center, for the first African American Scleroderma Patient Education Day. » Learn more


Affordable Care Act 101 Interactive Call: You're Invited!

The Department of Health and Human Services Center for Faith-Based and Neighborhood Partnerships is offering an interactive conference call to discuss the benefits and provisions of the Affordable Care Act. » Learn more

PH News Headlines

» Endothelial-like Cells in Chronic Thromboembolic Pulmonary Hypertension

» Diagnosing and Treating PAH

» High Blood Pressure in Lungs Can Pose a Danger for Women

» Celebration of Life Celebrates Organ Donation

» More News

Connect with PHA

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Email a mentor. Patients and caregivers are ready to support you.

Upcoming Events

Aug. 28, 2011
Sing and Soar PHor a Cure
West Milford, N.J.

Aug. 30, 2011
Iron Pigs PHA Fundraiser
Allentown, Penn.

Sept. 10, 2011
5th Annual Walk and Roll
Akron, Ohio

» Go to the Events Calendar

Generation Hope Blog

Video Spotlight

Gerardo Santos

Watch as Gerardo shares his inspirational story and connection with PHA. Two months after his PTE surgery, Gerardo Santos wanted to prove to himself that he could “get back with it.” On June 4, 2011, he did just that. With his pulse oximeter and two oxygen tanks in tow, Gerardo participated in the “Race 2 CURE PH Taylor Caffrey Memorial 5K Walk/Run.”

Become Empowered by Membership

Need more information? Contact
Pulmonary Hypertension Association 801 Roeder Road, Ste. 1000 Silver Spring, MD 20910
Office: 301-565-3004 | Fax: 301-565-3994

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.