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
2020 events
Tell your story!
Chylles' ROHHAD Fight
Stacie - United States
ROHHAD
Chylles Madalyn was healthy, high energy little girl with no fears, no worries & full of life. That's before she was affected by ROHHAD symptoms just prior to her 3rd birthday. After a year long battle
I strive for excellence
Kerry Ann - United States
Triple X syndrome
Imagine a world where you do not appear to have learning disability. I have a rare chromosome syndrome that few people have heard of: Trisomy X chromosome syndrome, also called Triple X syndrome or 47,XXX.
Tumbelina
Ernestina (Ernie) - United States
Silver-Russell syndrome
I had to show my California ID, when I was already over 18 to a lady that works at Walmart so I could get a sample of a pizza that was being sold. Yup, just for a slice of pizza, I mean I laughed it off