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!
Perserverence
Holly - United States
Esophageal Cicatricial Pemphigoid, Bullous pemphigoid
It struck suddenly and changed my life. One peaceful evening I began vomiting blood. After being released from the emergency room, I spent the next 3 days in agonizing pain; not even able to swallow my
Meet DANIYAL
SALMI - Malaysia
Mucopolysaccharidosis type 2
About  Daniyal He was born on 28th January 2016 delivered normally with no complication.  At that moment he brought us joy and laughter. Cute little boy as normal as other baby.When he was six months yr
Lily's Journey with SCN8A
Karen - United States
SCN8A
My daughter was born in March of 1998 and was delivered having a seizure.  The first diagnosis she received was Epilepsy at 1 month of age.  Over the next year, her seizures increased and her development