PHA News
In This Issue
Awareness Month Site Launched!
Eliminate Lifetime Insurance Caps
PH Resource Network Reaches Record Numbers
Vote Now for the Blue Lip Idol
Survey Prize Winners Announced
Raise Your Voice through the PHAware Campaign
Social Security Administration Video
Sign Up for Conference Alerts
Research Grant Opportunity
PH in the News
PHA is Coming to Your Area
Join Our E-News Lists
Join our other e-news lists
  • Advocacy Action Alerts
  • Advances in PH medical journal
  • Legacy E-Newsletter
  • Mid-Atlantic PHA Volunteers (MD, VA, DC)

Not already a PHANews subscriber? Subscribe today!

Join Our E-News Lists

Quick Links
Donate Now
Sustainers Circle - Monthly Gift
Upcoming Events
Fifth Annual N.Y. Funwalk for PH
Oct. 3, 2009
East Meadow, N.Y.
Sixth Annual Georgia Funwalk
 Oct. 10, 2009
Peachtree, Ga.
PHA Exhibit at the 17th Annual October Health and Fitness Fair
Oct. 17 - 18, 2009
Boise, Idaho
Through Tears Comes Laughter: An Evening of Comedy and Music
Oct. 24, 2009
Charlotte, N.C.
Vol 10/Number 20 October 5, 2009
PHA logoPHANews Editor - Sally Maddox
Contributing Editors - PHA staff
Reaching over 6,500 subscribers
Get Ready to Raise Awareness in Your Community this November
PH Awareness SkaterNovember is just around the corner, and PHers everywhere are getting ready to work for a cure in their communities. Whether you're raising awareness through the media, planning or attending a special event, raising money for a cure or contacting your Congressional representatives, you now have a dedicated resource on PHA's website to help you get started.

The 2009 PH Awareness Month website is your portal to the Online Action Kit, which will help you decide how to get involved and provide you all the information you need to begin. You'll also find great new opportunities to raise awareness online through blogging, Facebook and Twitter, as well as information on attending PHA's Congressional Luncheon on Capitol Hill.
We can't wait to help you raise awareness this November -- visit the PH Awareness Month website now to get started!
Take ActionShow Your Support and Contact Your Senators and Representative

PHA has signed on to a series of letters, released by the Raise the Cap Coalition, encouraging members of Congress to include and implement the elimination of lifetime caps in healthcare reform.
Read the letter, and then help emphasize the importance of this issue by encouraging your Senators and Representative to support the Health Insurance Coverage Protection Act.

The PH Resource Network hosted a record number of attendees and raised $3,700 in support of PHA at last week's PH Resource Network Symposium Leading Progress, Creating Partnerships: Empowering the Interdisciplinary PH Team. 

PH Resource Network BannerMany of the nearly 400 registrants participated in PHA Advocacy Day, where they heard remarks from Reps. Kevin Brady and Lois Capps and met with their Congressional representatives to encourage them to co-sponsor the Tom Lantos PH Research and Education Act.

Keynote speakers Michael Petty and Donna Cardillo gave rousing addresses to inspire their audiences. The weekend closed with an engaging presentation on REVEAL Registry Outcomes from Dr. David Badesch, Dr. Harrison Farber and Abby Poms, RRT.

Symposium session materials will be online by the end of November. All attendees will receive DVDs of the sessions. 

For upcoming CME events, check out the Medical Education Calendar!

Blue Lip IdolPHA-UK's Blue Lip Idol contest has reached the finals, and four Americans are in the running!
Cast your vote today for Monica Sifuentes (Long Beach, Calif.), Elizabeth Cherry (Tulsa, Okla.), Diane Ramirez (Lexington, N.C.), Martin Fields (Mechanicsville, Va.) or your favorite international finalist.

More than 10,000 PHers worldwide have submitted photos in support of PH patients - take a look and submit your own if you haven't already!
Congratulations to PHA Prize Package raffle winners Noel Holly and Veronica Franco!
Noel and Veronica were entered in the raffle after completing PHA's insurance survey this summer. The prize package includes Pulmonary Hypertension: A Patient's Survival Guide, a PHA water bottle, a PHA car magnet and more.

Thank you to the 300-plus community members who completed the survey!
PHAware Campaign LogoTelling our personal stories and sharing information about PH are what makes PH Awareness Month so effective in changing the history of this disease. PHAware Campaign members reached millions of Americans by generating more than 15 news pieces last November - that's one item of news coverage every other day.
You can be part of this growing number of voices by joining the PHAware Campaign and telling your story to the media this November for Awareness Month.
Whether you give an interview to a newspaper or television station, share a public service announcement, promote your event or write an op-ed, you'll be advancing our cause in one of the most powerful ways possible - by telling the world about pulmonary hypertension.
There's still plenty of time to start making your media plans, so contact Katie at 301-565-3004 x749 or to order a PHAware Campaign toolkit!
Thanks to collaboration between the PH community and the Social Security Administration (SSA), PH patients applying for Social Security Disability Assistance should now be encountering a more informed SSA team.

Over the past year, PH community members have worked with the SSA to create a training video on PH for SSA adjudicators. The video, released in mid-August, highlights common PH types, symptoms and diagnostic tests.

You can watch the video at PHA's YouTube Channel or on our website.

Sign up Now for PHA's 2010 International PH Conference Alerts List
You can now receive email alerts about PHA's 9th International Pulmonary Hypertension Conference and Scientific Sessions to be held June 25-27, 2010, in Garden Grove, Calif.
Visit the International PH Conference website to sign up for alerts on all things related to the 2010 Conference, including the launch of Conference Scholarships and registration. 
2010 ENTELLIGENCE™ Young Investigators Award Program

Medical ProfessionalsResearchers early in their careers are encouraged to apply for a $100,000 grant to support original pulmonary hypertension research over a 12-month mentored project.
Visit PHA's research funding page for more information on other PH research grants.
PH in the NewsPH IN THE NEWS
Tracleer Receives Label Extension in Canada for the Treatment of Patients With Mildly Symptomatic WHO Functional Class II Pulmonary Arterial Hypertension
(Marketwire) Laval, Canada - Actelion Pharmaceuticals Canada Inc. announced that Tracleer® (bosentan), a dual endothelin receptor antagonist, has been approved in Canada for the treatment of patients with mildly symptomatic WHO Functional Class II (FC II) pulmonary arterial hypertension (PAH). Read article
Sildenafil Research Shows Benefits To Children With PAH
(Ukmedix) Vienna, Austria - Sildenafil has been shown to improve the peak oxygen consumption in children suffering from Pulmonary Arterial Hypertension. The research, which was submitted at the Annual Congress of the European Respiratory Society in Vienna, Austria, is a big step forward in the treatment of Pulmonary Arterial Hypertension and gives more information on exactly how and why sildenafil is effective in treating patients with this condition. Read article
Mark Your Calendar for These Upcoming Building Medical Education in PH Events
For Medical Professionals 
Oct. 17, 2009 - Manhasset, N.Y.
North Shore University Hospital

3rd Annual Symposium on Pulmonary Arterial Hypertension and Advanced Lung Disease
This symposium will address evidence-based treatment options, the latest guidelines on PAH management and recent advances in the management of interstitial lung disease and COPD. Learn more online or call 516-465-2500.
For Medical Professionals, Patients and Caregivers
Nov. 6, 2009 - Chapel Hill, N.C.
University of North Carolina at Chapel Hill and Duke University

UNC-Duke Research Triangle Pulmonary Hypertension Symposium
This one-day symposium will address controversies in PAH management and proper diagnostic approaches, including an update on PH classification and guidelines for oral therapies. The agenda includes case-based interactive sessions and expert panel discussions, as well as a patient information symposium in the afternoon. Learn more online or call 919-962-7399.

Nov. 20-21, 2009 - Cleveland, Ohio
Cleveland Clinic

Pulmonary Hypertension Summit: Translating Discoveries into Patient Care
This two-day summit will cover the basic understanding of the pathobiology of PH, advances in clinical pulmonary hypertension evaluation and updates on therapy options. Patient-oriented sessions and case-based sessions for physicians and other healthcare providers will also be featured. CME credits available; PH patients and their families are invited to attend for free but must register in advance. Learn more online or call 216-445-5763.

Our free, five-part Creative Estate Planning Course is informative and practical no matter the size of your estate. Every two weeks, we will send you a lesson.  Upon completion, you'll receive your customized Personal Estate Planning Record, a booklet that pulls it all together for you.
To enroll in the self-paced course, contact Jillian McCabe at or 301-565-3004 x767.

FacebookTwitterInstagram iconLinkedInYouTube

For optimal viewing of, please use a standards-compliant browser such as Google Chrome or Firefox.

The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

801 Roeder Road, Ste. 1000, Silver Spring, MD 20910   Patient-to-Patient Support Line: 1-800-748-7274
    Privacy Policy    Provide Feedback & Report Bugs

Designed by Matrix Group International, Inc.® | © 2015 Pulmonary Hypertension Association. All Rights Reserved.


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.