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!
Jackson's Journey
Jessica - United States
MECP2 Duplication Syndrome
I’ve always been a worry wart when it came to my son, Jackson. Although I never wanted to find anything wrong with him, I always felt like there was something we were missing. Turns out I was right. Throughout
From Challenging Phases
Zoyeb - India
Ataxia with occulomotor apraxia
From Challenging Phases To Facing ChallengesStory of Zoyeb from Chennai / India - ATAXIAWritten by his father – Iftikhar -------------------------------------------------------------------------------------------------------------------------------Zoyeb
Stay With Me
sakon - Thailand
Adenosine Kinase Deficiency
Charm, 4-year-old girl from Thailand.She is ill with inherited metabolic disorders, Adenosine Kinase Deficiency. She is the only patient with this disease in Thailand and the world is still very rare. Inborn