CheckOrphan NewsFlash for Tuesday, October 27, 2009 – breaking news about rare diseases, orphan diseases, orphan drugs, and neglected diseases. Today’s broadcast highlights topics about: Leber’s Congenital Amaurosis, Epidermolysis Bullosa or EB, gene therapy, Dystrophic Epidermolysis Bullosa Research Association (DEBRA) Canada, Pulmonary arterial hypertension, PAH, University of California San Diego, multiple sclerosis or MS, University of Buffalo, Leishmania donovani parasite, INRS, macrophages, Visceral Leishmaniasis

An introduction to the symptoms of pulmonary hypertension, how the disease affects patients lives and the progress being made to fight PH. This clip appears clip is an introduction to the “Understanding Pulmonary Hypertension” DVD, available in PHA’s Press Kit. For a free press kit, write to Nathan@PHAssociation.org

PH patient Aletha Ellison shares the journey of her diagnosis and her life with pulmonary hypertension at PHA’s 8th International Conference in 2008

Welcome to the Pulmonary Hypertension Association’s YouTube Channel! This is the premier place on the web to find videos from PHA that will help you, your friends and your community learn more about pulmonary hypertension. This short video introduction will show you how to navigate and use our YouTube site so that you can find the videos youre looking for, share them with your friends, be alerted when PHA posts new videos, and let us know how were doing and what youd like to see on the future.

Pulmonary Hypertension patient Cindy Pickles explains why her Support Group raises money for PH Research.

A pulmonary hypertension patient at PHA’s 8th International Conference shares what she’s taken from her experience with the PH community at Conference.

When Dawn Jones was diagnoses with pulmonary hypertension, she was told there were no treatments and she had 1-3 years to live. She had been active before she became ill, and she still maintains a positive attitude. This clip appears clip appears in the “Understanding Pulmonary Hypertension” DVD, available in PHA’s Press Kit. For a free press kit, write to media@PHAssociation.org

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 Brian Hanna, MD and Darby Hetrick share their journey with pulmonary hypertension.

PHA Special Events organizer Sally Maddox talks about why she raises money in the fight for a cure for pulmonary Hypertension.