These people are living with a rare disease and educating the wider public.
My 5-year-old daughter, Angelina, is living with CASK-gene related disorders – more precisely, she is living with an X-linked intellectual disability, microcephaly with pontine and… Continue reading Angelina’s storyRead full story
I was diagnosed when I was 17 years old with tenosynovial giant cell tumor (TGCT), a rare locally aggressive tumor that occupies the synovium, tendon… Continue reading Patient becomes Scientist and develops nonprofitRead full story
I was born with XLH – X-Linked Hypophosphatemia, I’m 36 years old and I’ve had 12 leg surgeries and relearned to walk 18 times. I… Continue reading The ability to reinvent yourself is the greatest skill of a human being!Read full story
A partir del diagnóstico de esclerosis múltiple primaria progresiva en el año 2010, la vida no ha sido fácil pero puedo dedicarme al activismo social… Continue reading Activista por la EM y enfermedades poco frecuentesRead full story
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