Thank you Coriell Institute for Medical Research for sharing our family's story and why we are so passionate about working towards change in our #raredisease community! "Advocacy can give patient families – families who have been dealt an often life-changing diagnosis – an opportunity to take … [Read more...] about ARTICLE: From Rare Diagnosis to Fierce Advocacy
Robert Ostrea
My Rare Disease Week in DC 2018
Written by Robert Ostrea This past week was a very enjoyable and productive week for the more than 400 patient and parent advocates representing one of the more than 7000 rare diseases known to mankind. The last day of February is internationally recognized as Rare Disease Day. This date was … [Read more...] about My Rare Disease Week in DC 2018
