Had a great day hosting a booth for International FOP Association for Rare Disease Day. Met some brilliant researchers, med students, doctors, and other families living with a rare disease...all working together for support, advocacy, awareness, treatments and cures!!
A huge thank you to Susan Fernbach, Director of Genetic Outreach for Baylor College of Medicine for organizing today's event!
Rare Disease Day is coming up on Feb 28th where millions of patients and their families around the world share their stories to promote awareness of the challenges, hopes and needs of those living with rare diseases. While each disorder may only affect a few, collectively they affect 10% of the population!!
Rare Disease Day is coming up on Feb 28th where millions of patients and their families around the world share their stories to promote awareness of the challenges, hopes and needs of those living with rare diseases. While each disorder may only affect a few, collectively they affect 10% of the population!!
Daniel's condition is FOP. Go to www.daniels-den.com or www.ifopa.org for more information. Thank you!!
RSS Feed