June 13, 2012

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

Carl Hicks, An Advocacy Hero

On Wednesday, June 6, Carl Hicks sat at a long table in front of the Senate Defense Appropriations Subcommittee and told his story and made his requests. » Read more

What's In This Issue

» Spotlight On... Conference
» Coming to Conference? Check this out!
» Not coming to Conference? Participate from home!

» Get Smart
» PH Community Scoop
» Medical Community Bulletin
» PH News Headlines

Spotlight On...
    Pulmonary Hypertension  Association launches a new website for Conference.

Final Tips for PHA's 10th International PH Conference

PHA’s 10th International PH Conference and Scientific Sessions is right around the corner. We wanted to share some final information and tips about your time in Orlando! » Learn more

In this issue of PHANews, you will also find more information about how to get involved while in Orlando, or if you can't make it, we have ways that you can participate from afar. Read on!

Coming to Conference? Check this out!
    Conference Mobile App

Things I Found by Kathryn Frix: Conference Mobile App

I found a useful and fun thing while reading Table Talk: Wired, the Conference blog. I found a mobile app for Conference! Now, I have to admit I am a hopeless app enthusiast, I shop for them like some people shop for jewelry and shoes. I have never had a passion for those things, but apps, I like. So I was definitely pleased to see a Conference app! » Read more

    Medically Led Sessions

A New Step in Collaborative Care: Patient Participation in Medically Led Session Panels

PHA’s 10th International PH Conference offers a great deal of education for patients and their family members. For many, the Medically Led Sessions are a highlight of Conference. These sessions are led by panels of medical professionals and, for the first time ever, feature patients at select sessions. » Read more


Research Room Forms Available

Research Room Enrollment Forms are now available online. Save time at PHA’s International PH Conference and fill out your paperwork before you arrive at the Research Room. This year, the event welcomes researchers studying topics from genetics of PH to autoantibodies in PAH and even psychological aspects of PH. Patients and non-patients are encouraged to participate! » Fill out your forms now

Not coming to Conference? Participate from home!

Advocacy at Home: Join PHA's Conference Advocacy Challenge!

Add your voice to the 1,400 Conference attendees urging their elected officials to support the Tom Lantos Pulmonary Hypertension Research and Education Act — all from the comfort of your own home! Since January, we’ve been counting all emails, phone calls, letters and Congressional visits from PH community members. By adding your voice, you get us closer to achieving our PHA Conference Advocacy Challenge goal to inundate Congress with more than 1,100 requests for co-sponsorship of the PH Research and Education Act. » Act now


Follow Conference from home on the Conference blog!

This Conference will be PHA’s largest yet, but there are still many in the community who will not be able to attend. For those of you who cannot attend, you can follow Conference happenings on the Conference blog, Facebook or Twitter (#PHAConference). » Read the Conference blog


Patient Telephone Support Group Live from PHA's International PH Conference

Thursday, June 21, 8:00 p.m. ET/5:00 p.m. PT
If you can’t make it to Conference and want to talk to another patient, you’re in luck. For an hour on Thursday night during pre-Conference activities at PHA’s International PH Conference, you can dial in and talk to patients participating in this epic event in Orlando. We want to provide you support, whether you travel to Conference or not. » Register now

Contact SupportGroups@
for more information.

Get Smart

Transplant Recording Available

Transplantation – or even just undergoing a transplant evaluation – can be challenging and stressful for everyone involved. In this recording, Allyson Rupp, LCSW, discusses the emotional impacts of undergoing a transplant evaluation, the psychological impacts of receiving a transplant and tips for coping during the transplant process. » Listen to recording

PH Community Scoop

Special Events from Coast to Coast

PHA extends a warm thank you to our volunteer event organizers who gathered crowds on the west coast and east coast to walk, run, wash, play bocce and more for a cure this past month! » Read more

    Caffrey Family

Help Make a Community Member a Winner

Shari Caffrey, founder of Taylor’s Wish, an organization created in memory of her young daughter, and organizer of the Annual Race 2 Cure PH: Taylor Caffrey Memorial 5K Run/Walk, is one of nine semifinalists for the Lady Godiva Program. Help us honor Shari for her commitment to PH awareness and advance her to the finals by casting your vote today! » Read more

Medical Community Bulletin

New PHA Online University Course: Considerations in Nursing

This course features three sessions that focus on the following issues: “Transitions in Therapy: Integrating Best Practices,” “Asking the Right Questions: The Lost Art of Patient Interviewing” and “A PAH Treatment Algorithm: The Power of a Solid Plan.” This course is offered for a maximum of 3.0 hours of nursing CEUs. » Learn more

PH News Headlines

» Woman Sings Anew After Second Double Lung Transplant

» Pulmonary Hypertension in Patients with Martorell Hypertensive Leg Ulcer: A Case Control Study

» N-terminal Pro-Brain Natriuretic Peptide in a Novel Screening Algorithm for Pulmonary Arterial Hypertension in Systemic Sclerosis: A Case Control Study

» Mylan (MYL) Gets Approval for Generic Pulmonary Arterial Hypertension Drug in Canada

» Inhibition of PBEF Is a Possible Therapeutic Target for Pulmonary Hypertension

» VentriPoint Multi-Centre Clinical Trial Focuses on Ultrasound Diagnostic Tool for Heart Analysis

» More News

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Upcoming Events

June 22-24, 2012
PHA's 10th International PH Conference and Scientific Sessions
Orlando, Fla.

June 25, 2012
2012 JFK Tower Golf Tournament
White Plains, N.Y.

July 9, 2012
Swing 4 the Cure Wojo PH Golf Classic
Aliso Viejo, Calif.

» Go to the Events Calendar

Get to Know the Generation Hope Advisory Board

Table Talk: Wired


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.