Tell your story!

Share your photos, videos and your experiences! Be part of Rare Disease Day by informing others and raising awareness—sending a message of solidarity and community.

Check out all the stories

Miss Sofia Rita Belmonte - 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 Hospital and Camperdown Children's Hospital Professor Bridget Wilcken and The Yale Children's Medical Hospital Where I was Diagnosed with Combined Cobalamin C Defect , Two Way S Bend Scoliosis Pedi...
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 between 1 or 2 in 100,000. The right side of his body, from his chest to his legs, is larger than the rest of the body. “KTS is a congenial malformation affecting the lower limbs,” said Kumud Rai, d...
Emma - Australia
My autoimmune problems started when I was really young having a lot of hereditary illnesses. I've had Reynauds for as long as I can remember. And the older I became the worse my Multiple Auto Immune problems becoming a Syndrome 'MAS'. At 16 I was diagnosed with Chronic Systemic Vasculitis, Fibromyalgia, Hypoxia, Eosinophilic Esophagitis and POTS (Postural Orthostatic Tachycardia Syndrome. At 18 ...
1 2 3 ... 207 208

Write your story