This four-part video is a round table discussion between several of PHA’s emerging leaders. This was the final general session at PHA’s 2008 Conference. Hear their advice on how everyone can help raise awareness of pulmonary hypertension through media, fundraising and advocacy.
A conference tradition! From PHA’s 2008 Conference, watch as Myung Park, MD and Donna Pederson share their journey with pulmonary hypertension.
Featuring an appearance by Charlie Daniels, this is the one minute trailer for our documentary, “Mercy Medical Airlift: Compassion Takes Flight,” about the nation’s largest and oldest nonprofit that coordinates and provides charitable medical air transportation for needy families and wounded veterans. Watch either the full one hour, or 22 minute, version for free at www.mercymedical.org. Please consider donating all or a portion of your frequent flier miles, or making a tax-deductible cash donation. Thank you.
Rare Disease Day 2010 Staggering millions of people worldwide are impacted by rare diseases. Join the global flight! This is the Hungarian “reincarnation” of the film of AddiCassiFund for public summons. Milliónyi embert érintenek az un. “ritka betegségek”, amik nem is olyan ritkák, hiszen oly sokféle van bel?lük! Támogassa részvételével is a RIROSZ rendezvényét!
Prof. Antonios Trakatelis, MEP, Greece addressing the European Rare Disease Organisation’s Annual Membership meeting in Athens in May 2009. The meeting was themed : No Rare Disease policy without patients
TheIFOPA presents the FOP Facts & Insights series, an video collection offering information for FOP patients, parents and caregivers. This video provides information on the risks incurred by FOP patients considering pregnancy. It includes information by Frederick Kaplan, MD and Dr. Eileen Shore, Ph.D. of the University of Pennsylvania School of Medicine. For more information on FOP, or to donate to our cause, visit the IFOPA website at www.ifopa.org.
PHA Special Event organizer Joanne Sperando-Schmidt talks about why she raises money for the PH community with the New York PH Funwalk
The Global Genes Fund is a platform dedicated to promoting rare disease research initiatives that are focused on developing therapies and treatments within these childrens lifetimes. This platform will be a clearinghouse for innovative, collaborative research that will impact the millions of children affected by rare diseases and disorders. Vote Today! www.refresheverything.com/fund-hope-for-sick-kids
EURORDIS (European Rare Diseases Organisation) organised a Dinner Debate on March 3rd 2009 at the European Parliament in Brussels hosted by MEP Prof Trakatellis, Parliament Rapporteur for the Council Recommendation on the ocassion of Rare Disease Day
Our child is still happy guy in spite of the regression this disease has caused. No cures are availabe as of yet. But we have hope, as he is 13 years now