In Spanish: malformación de Chiari

Buenos días: Me presento mi nombre es Marta Fdez. De Gamboa soy la presidenta de la Asociación Nacional Amigos de Arnold Chiari. Cree en el… Continue reading In Spanish: malformación de Chiari

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Kicking SPS – Fight On !!!

I have Stiff-Person Syndrome (SPS), a rare neurological disorder affecting about one in a million people. In 2006, I discovered I had a broken back,… Continue reading Kicking SPS – Fight On !!!

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Hello my name Is Starrla, what I will do for rare disease day is advocate for people affected by a rare disease. I hope that… Continue reading Starrla

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I want to say more about Osteopetrose – this is the result of the genetic study of my son “Molecular study of CLCN7 gene (performed… Continue reading Osteopetrosis

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Cleft Hands

My story is not a happy one..I was born on August-17-1994 The day I came into the world doctors were so interested in my Birth… Continue reading Cleft Hands

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