Curren Ramsey - United States
My son is two years old, and has seen 12 different doctors. His weekly schedule is jammed packed with 11 hours of therapy – PT, ST, OT, ABA, ITDS – a sea of simplified acronyms for a world that is so complex.
Sophia Gasper - United States
I hear all these wonderful stories about kids and adults with rare diseases, and how they function in life. I hear about rare disease day, the 29 of February, and usually think to myself, "I have a rare
Kayleigh - United Kingdom
My 2.5 little girl has recently been diagnosed with alexanders disease a very rare life threatning / changing / shortening disease !!:" devistating as she is only 2 and a half lets fight rare diseases