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
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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
Patient organisations in Thailand first became involved in Rare Disease Day in 2011. Since then, they’ve used the occasion to host an annual public gathering… Continue reading Thailand
Paraguay held its first ever Rare Disease Day celebrations in 2014, with a number of events across the country throughout February. Highlights included a scientific… Continue reading Paraguay