Years before, I had always been excited for the final day of February – Rare Disease Day – bur after my grandmother died the year… Continue reading Half The World Goes Dark
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My story as a patient in Romania Multiple autoimmune diseases (Dermatopolymyositis, Scleroderma, Sjogren’s Syndrome, Rayanar Syndrome, Mixed Connective Tissue Disease, Overlap Syndrome My name is… Continue reading My story as a patient in Romania
In 2018 I was diagnosed with a rare, inherited retinal disease called Retinitis Pigmentosa. RP is an umbrella term for a host of eye conditions… Continue reading A slow Eclipse
My journey began at 13 when swelling from an extraction never went down so had to get a biopsy done on my jaw. I was… Continue reading The Strength is Within Us
A Friendship Story For your use, please find the link to a children’s book, A Friendship Story, from established Serbian author Danijela Pešić, also known… Continue reading School toolkit: for children (5 to 6 year olds)
The present Conditions of Use (together with the Privacy Policy and the Cookie Policy) govern your use of the website www.rarediseaseday.org (“Website”). Use of Our… Continue reading Conditions of use
Frequent visits to doctors and hospitals form many of Shambhvai’s earliest memories. To her frustration, she kept being treated for individual symptoms as opposed to… Continue reading Shambhavi’s Story
I am Syafiq from Malaysia and I am living with Hypohidrotic Ectodermal Dysplasia (HED). I love hiking in the jungle and jogging (which previously I… Continue reading Syafiq’s Story
22-year-old Nada, whose life has been impacted by a rare disease that makes it difficult for her to move, read and swallow, has got a… Continue reading Nada’s Story