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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
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
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
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
Check out two upcoming Building Medical Education in PH events:
Oct. 9, 20134th Annual PH Symposium: New Advances in Pulmonary Hypertension - Sharing Comprehensive Clinical Experiences Oak Lawn, Ill.
Oct. 11-12, 2013Midwest Pulmonary Hypertension Symposium Overland Park, Kan.This event has a patient component.
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
ParentsSept. 16, 201311 p.m. ET/8 p.m. PT
Sept. 18, 20138 p.m. ET/5 p.m. PT
CaregiversSept. 18, 20131:30 p.m. ET/10:30 p.m. PT
PatientsSept. 26, 20138 p.m. ET/5 p.m. PT
Sept. 16, 2013O2 breathe Golf TournamentArmonk, N.Y.
Sept. 20-22, 2013PHA Canada's 3rd National PH ConferenceOttawa, Canada
Sept. 21, 2013O2 breathe WalkPalatine, Ill.
» Go to the Events Calendar
Need more information? Contact PHANews@PHAssociation.orgPulmonary Hypertension Association 801 Roeder Road, Ste. 1000 Silver Spring, MD 20910Office: 301-565-3004 | Fax: 301-565-3994
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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.
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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.