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
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
No limitations
Larry - United States
Klippel-Feil malformation
Hello, This is not my story, but of my grandson. Back in 2012, I was blessed with my first grandchild. Jayden came into our lives and we were blessed. In the hospital, I noticed that something wasn't quite