Sept. 4, 2013

       
PHA News, Pulmonary Hypertension Association, Empowered by hope
Blog Post from PHA's President
    FDA Advisory Panel

We Continue to Advance

This blog was originally posted on August 8, two days after an FDA advisory panel voted their opinion on Riociguat. It is now updated following the publication of an August 29 New England Journal of Medicine article and September 2 presentation of new data on Macitentan at the European Society of Cardiology Conference in the Netherlands. If approved, both drugs may offer additional treatment options for PAH (and Riociguat also for CTEPH). FDA decisions are expected by mid-October. » Read more

PH Legislation Gaining Traction
   

PH Bill Introduced in Senate, Endorsed by American Medical Association

The Pulmonary Hypertension Research and Diagnosis Act (H.R. 2073/S. 1453) – the only PH-specific bill in Congress – made exciting progress last month. It was introduced in the Senate and received support from the American Medical Association (AMA). Read more | Email your senators now

Fighting Back Through Local Events
    Esther

Young PH Patient to Be Ambassador of Hope at Baltimore Walk

To the untrained eye, Esther Grace Liu of Fairfax, Va., seems like a typical 3½-year-old. This summer, she attended day camp for the first time and vacationed at Disney World with her parents and brothers. However, though Esther appears lively, she also exhibits the telltale signs of pulmonary hypertension, and this fall, Esther’s family is fighting back by getting involved in the Baltimore Walk for Hope. » Read more

New PH Resource for Kids
    Someone I Love Has PH

New Booklet for Kids with a PHer in Their Lives

PHA has just released a new booklet for kids and teens ages 10 – 14 who have an adult in their lives diagnosed with PH. The booklet is available as part of the PH Handbook for Families, which includes the booklets of your choice and PH-related activity sheets. » Request your free PH Handbook for Families now

For Medical Professionals: Upcoming BME Events
    Building Medical Education in PH

Building Medical Education in PH Events in Illinois and Kansas

Check out two upcoming Building Medical Education in PH events:

Oct. 9, 2013
4th Annual PH Symposium: New Advances in Pulmonary Hypertension - Sharing Comprehensive Clinical Experiences
Oak Lawn, Ill.

Oct. 11-12, 2013
Midwest Pulmonary Hypertension Symposium
Overland Park, Kan.
This event has a patient component.

PH News Headlines
   

Research & Treatment News
» SERAPHIN: Novel PAH Drug Reduced Morbidity, Mortality Rates

» A Categorically Novel Finding: Fighting Against Severe and Progressive Pulmonary Hypertension

» Doctors in Australia Highlight Danger of Breathlessness

Updates From PHers Around the World
» PH Plus Blog: Josiah's Journey with PH+

» Generation Hope Blog: PH Goes to College

» PHA Wins Publications Award

» Newsmaker: Dr. Patricia George

» More News

Connect
with PHA

 

Telephone Support

Parents
Sept. 16, 2013
11 p.m. ET/8 p.m. PT

Sept. 18, 2013
8 p.m. ET/5 p.m. PT

Caregivers
Sept. 18, 2013
1:30 p.m. ET/10:30 p.m. PT

Patients
Sept. 26, 2013
8 p.m. ET/5 p.m. PT

Upcoming Events

Sept. 16, 2013
O2 breathe Golf Tournament
Armonk, N.Y.

Sept. 20-22, 2013
PHA Canada's 3rd National PH Conference
Ottawa, Canada

Sept. 21, 2013
O2 breathe Walk
Palatine, Ill.

» Go to the Events Calendar

 
 

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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.