Feb. 6, 2013

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

From Orlando to Istanbul...

At PHA’s 2012 International PH Conference and Scientific Sessions in Orlando, Fla., one of our medical speakers was Dr. Ghazwan Butrous, a Professor of Cardiopulmonary Sciences at the University of Kent in the United Kingdom. We have known Dr. Butrous since he played a critical role in demonstrating the value of sildenafil for treatment of PH. Today, he plays another important role as Managing Director of the Pulmonary Vascular Research Institute, an organization of physicians with whom PHA has been developing an increasing number of partnerships. » Read more

What's In This Issue
   

» Spotlight On... Newly Diagnosed Patients
» Get Smart
» Website Discoveries
» PH Community Scoop

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

Spotlight On... Newly Diagnosed Patients
    Newly Diagnosed

PH Ready, a New Tool for the Newly Diagnosed Patient

If you have recently been diagnosed with pulmonary hypertension, you probably have a lot of questions and concerns. PHA has created The Newly Diagnosed Self-Study: PH Ready, a series of e-courses with information about treatments, living with PH, insurance, working with your medical team and more. Sign up now | Check out some recommended recordings to get you started

   

After the Diagnosis: Courage to Take the Next Step

Monday, Feb. 25, 4 p.m. ET/1 p.m. PT
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. » Register now

Get Smart
   

State of PHA: An Annual Update from Our President Rino Aldrighetti

Friday, Feb. 22, 2 p.m. ET/11 a.m. PT
Every year at PHA brings new developments. 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. » Register now

Website Discoveries
   

Things I Found by Kathryn Frix: PHA Daily Beat News Feed

Do you know that February is Heart Month? Do you know that presentations from the Scientific Sessions at Conference are available now online for Medical Professionals? Do you know PHA's 2013 legislative priorities and how you can help? How about Rare Disease Day - did you know it is February 28 and you can get involved on Facebook? » Read more

PH Community Scoop
   

Say, "I Love You" with a Gift of Hope

This Valentine’s Day tell that special someone you love them with a gift of hope. Make a donation to PHA in honor of your loved one and help PHA bring hope to families fighting PH through support, education, advocacy and awareness. Make a contribution in honor of your loved one today. » Donate now

From the PHA News Desk
    U.S. Capitol

What's Ahead for PH Advocacy?

January kicked off the first session of the 113th Congress “resetting” the legislative clock — any proposed legislation that did not become law by the end of 2012 will begin the process again this year. In 2013, we will build on past legislative successes to fight for the PH community. » Read more

Medical Community Bulletin
   

New Clinical Trials Posted

Two new research studies have been posted on PHA’s clinical trials page. PHA is committed to keeping the PH community informed about ongoing clinical research in the field and will post trials submitted by research sponsors and institutions online. » See them now!

Also of Interest
   

Celebrate New Life Through Transplant

Feb. 14 is National Organ Donor Day
More than 116,000 Americans, including PH patients, are waiting for life-saving organ transplants. A single donor can save up to eight lives. This Feb. 14 thank an organ donor in your life, confirm your organ donor status, or spread the word about why organ donation matters. Learn more and communicate about organ donation | Learn more about PHA's transplant resources

PH News Headlines
   

Research and Treatment News
» Genomic Analysis - New Machine Could Aid Researchers Investigating Genetic Basis for Rare Diseases

» More News

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Telephone Support

Caregivers
Feb. 20, 2013
1:30 p.m. ET/10:30 a.m. PT

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Feb. 21, 2013
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Feb. 28, 2013
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Upcoming Events

Feb. 15, 2013
6th Annual Fish Fry Fundraiser
San Diego, Calif.

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NORD

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.