May 29, 2013

       
 
PHA News, Pulmonary Hypertension Association, Empowered by hope
   

Enjoy the new format of PHANews!

  We hope you are enjoying the shorter, sleeker newsletter. We have changed up the format so we can better highlight key news from the PH community. Want more? You can stay more fully up-to-date all the time by visiting PHA Daily Beat.
Blog Post from PHA's President
    Dorothy's Victory

Dorothy's Victory ...

Dorothy Olson, one of PHA's four founders, passed May 18 at age 88. Diagnosed in 1978, Dorothy searched years to find other patients with whom she founded PHA. Our community thrived on her lifelong leadership, and we are grateful for all she did to fight PH. I wrote the piece below for her May 21 memorial service. Be sure to view the video of Dorothy at the end. » Read more

From the PH Community: Generation Hope Blog
    Kiara Tatum

Like Oil and Water: Work and PH

By Kiara Tatum
The school year has finally ended, and my return to work after seven years has a summer break. It felt great to be working, using my Master’s degree in social work, teaching diverse students, having discussions on contemporary social problems, and actually getting paid to work. I didn't know if I could actually do this, but I wanted to try it — failure or success didn't matter. » Read more

PH Patients and Families: Get Connected
    Get Connected

Sign Up for Monthly Telephone Support Group Reminders

PHA offers three monthly Telephone Support Groups! It only takes two seconds to sign up for a monthly email reminder for the Telephone Support Group of your choice. » Get connected

For Medical Professionals
   

PHA Partners with Yale School of Medicine for Upcoming Event

Thursday, June 6, Madison, Conn.
The 7th Annual Pulmonary Hypertension Symposium will take place this June as part of the Building Medical Education in PH (BME) program. This symposium will review PH diagnosis; currently available PAH therapies; Systemic Sclerosis-Associated PAH; PH in pregnancy; and management of right heart failure from severe PH. This event is geared toward medical professionals but is also open to patients. Learn more | Register

PH News Headlines
   

Research & Treatment News
» 30 Years of Orphan Drug Act, Combined with Science and Advocacy, Reflect Dramatic Progress in a Rare Lung Disease

» Exercise Capacity Affects Quality of Life in Patients with Pulmonary Hypertension

» Dr. Channick, MD, Discusses Clinical Trial in Pulmonary Hypertension

» Riociguat Shows Promise in Pulmonary HTN

Updates From PHers Around the World
» PH Plus Blog: "Tweeting About Scleroderma is Not Just About Scleroderma"

» Singing Opera with Someone Else's Lungs

» Community Walk to Aid Those with Rare Lung Disorder

» More News

Connect
with PHA

 

Telephone Support

Parents
June 17 and 19, 2013
8:30 p.m. ET/5:30 p.m. PT

Caregivers
June 19, 2013
1:30 p.m. ET/10:30 a.m. PT

Patients
June 27, 2013
8 p.m. ET/5 p.m. PT

Upcoming Events

June 1, 2013
PHA on the Road: PH Patients and Families Education Forum
Denver, Colo.

June 5, 2013
PHA Online University Webinar: The Treatment of PAH with the Anti-proliferative Agent Hydroxyurea
online

June 8, 2013
Flames of Light Young Professionals Soiree with Sting
Highland Park, Ill.

June 11, 2013
PHA Online University Webinar: Role of Endothelial Apelin-FGF Link Mediated by miR-424 and miR-503 in PAH
online

June 21-22, 2013
6th International Neonatal & Childhood Pulmonary Vascular Disease Conference (includes a Family Session)
San Francisco, Calif.

» Go to the Events Calendar for many more June events

PHA on the Road

 
 

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

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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.