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
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쇼그렌증후군, 척수병, 혈관염 등등 15살
진웅 - Korea. Democratic People's
Sjogren's syndrome, myelitis, vasculitis
안녕하세요!저는 15살 때부터 쇼그렌증후군과 척수염 그리고 혈관염 등의 질환을 투병중입니다.또한 저는 한국에서 살고 있고 신학대학교를 다니거 있습니다. 감리교신학대학교와 성결대학교를 다녔습니다다.저는 어렸을 때 아버지 없이 어머니 혼자서 저를 키우셨고 너무도 가난해서 나라에서 기초수급자로 등록되어있습니다.저는 하루하루 열심히 살아가면서 하나님의 기적으로 이겨내고
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
Malaysia Pompe Warrior
Siva - Malaysia
Pompe disease, infantile onset
Swathi was born healthy on the 12th of April 2017. At the age of 6 months, upon prolonged boughts of pneumonia, a series of tests led to the shocking results of her diagnosis with Infantile Pompe disease.