TheIFOPA presents the FOP Facts & Insights series, an video collection offering information for FOP patients, parents and caregivers. This video provides information on pain management for people with FOP. 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.
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
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.
Boston College junior Denny Carr organized “Music for Mark” a 9.4-hour music marathon featuring some of the brightest musical talent on campus. All proceeds for the event benefited Uplifting Athletes, a nonprofit that pairs college football with outreach and advocacy of rare diseases. The organization helped to raise thousands of dollars and awareness of Ewing’s sarcoma, a rare bone cancer that BC Linebacker Mark Herzlich was diagnosed with last year. Music for Mark raised over $1000!
Sabine was a participant in the 5th European Conference on Rare Diseases (ECRD) Krakow, Poland 2010. Sabine is a member of DEBRA which is an international support network for patients living with the rare disease Epidermolysis bullosa
A message of hope at PHA’s 8th International PH Conference in Houston, TX
Dr. Mark Korson, Chief of the Metabolic Program at Tufts New England Medical Center, speaks about mitochondrial disease and patient challenges.
dr. Fabrizio Salvi, Head of the Centre for Rare Diseases and Neuroimmunitarie, (il Be.Ne.) Bellaria Hospital, Bologna. He’s the first neurologist to support Zamboni in clinical trials on MS patients, as well as the leading expert in the neurological ccsvi’s assessment
Video about The LAM Foundation.
Theresa & Brianna Couture, mom and her 15 year old daughter, speak emotionally about trying to live while having mitochondrial disease.