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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2 in a Million (or more!)
Jennifer - United States
BH4 Deficiency
2 of my 3 boys have BH4 Deficiency (PTPS Deficiency). My older one is now 10 and has speech and learning delays, but is one of the happiest, most accepting and loving kids you could ever meet. He is a
Never give up!
Isabella - Italy
Ehlers-Danlos syndrome, hypermobile type
Hi there!I am Isabella and I am a half-Italian, half-Hungarian girl who is currently living and studying in Finland. I have been diagnosed with Ehlers-Danlos syndrome type 3 (hEDS), other than some other
Finding the truth after
Daniel - Australia
Witteveen-Kolk Syndrome, Kallmann Syndrome, Congenital Diaphragmatic Hernia
Back in 2008, I was diagnosed with Kallmann Syndrome, after showing all the signs and symptoms, including no puberty, Anosmia and other things. I was placed on Pregnyl and Reandron, which gave me Testosterone