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
Mi chiamo Annarita ho 27 anni e sono residente a Pagani, un paese in provincia di Salerno. Il destino ha voluto che proprio il giorno… Continue reading Annarita e la sua passione per la danza oltre la disabilitàRead full story
Chapman, an extraordinary 12-year-old blind pianist, has embarked on an incredible journey since his birth. Born in Hong Kong and currently residing in London, Chapman… Continue reading Melodies of Resilience: Chapman’s Undiagnosis Disease and Musical TriumphRead full story
My name is Amber and I live in Queensland. I was born with Netherton Syndrome which is a form of Ichthyosis. Ichthyosis is an extremely… Continue reading A little insight to my daily life!Read full story
Marc, our son, is a wonderful 11-year-old enjoying life in the green, residential town of Sant Cugat (Barcelona, Spain). Not only does he fill our… Continue reading MARC, A HAPPY FACE DESPITE HIS RPS6KA3 GENE MUTATIONRead full story
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