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!
Always Tired and Bruising
Anthony - United Kingdom
Immune thrombocytopenia (ITP)
After over 13 years of living with my ITP I can reflect upon plenty of incidents during that time. It has certainly been eventful, to say the least.It all started in 2005 when I began getting random purple
Chylles' ROHHAD Fight
Stacie - United States
ROHHAD
Chylles  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 with doctors
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