Join us in making the voice of Rare diseases heard
28 february
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
2017 events
Tell your story!
Postal stamp for children
Gordana - Macedonia
Last year a member of the rare disease association 'Life with challenges', a mother of a child with Alport syndrome, Gordana Loleska, employed at the post office in Ohrid, began an initiative for creating
Combined Cobalamin C Defect
Miss Sofia Rita Belmon - Australia
Born as a Natural Breach Birth at the Canberra Hospital in July 1970 a Blood Transfusion and Rewiring my Eyes by 1978 I had a Massive Stroke and had to learn everything again I was again in the Canberra
On a limb and a prayer:
Arun Khandelwal - India
Three-year-old Akshaj sounds mature for his age. But his precocity may have come at a significant cost. Akshaj is suffered from Klippel Trenaunay Syndrome (KTS), a rare genetic disorder, arguably vary