Join us in making the voice of Rare diseases heard
29 february
Rare diseases heard day 2016 29 february Only 100 days remaining
Rare diseases heard day 2016 29 february Only 100 days remaining
Rare diseases heard day 2016 29 february Only 100 days remaining
2016 events
Tell your story !
Curren's Journey
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.
Make Masto Known!
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
Alexanders disease
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