Amanda’s Story

Amanda was born a normal beautiful baby girl weighing in a 6 pounds 8 1/2 ounces and 19 inches long in 1985. She progressed normally… Continue reading Amanda’s Story

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Symptomatic Tarlov Cyst

Classified as a rare disease sufferers like myself are entirely frustrating by the lack of knowledge on this issue we fight against GP who scoff… Continue reading Symptomatic Tarlov Cyst

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Cure for uncommon autoimmune disease

Symptoms: swollen and crack lips, mucous membranes ulcers(oral and virginal), swollen legs, weak joints Started: 1-jan-2012 It was started with an insect bite-like mark on… Continue reading Cure for uncommon autoimmune disease

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Living with Jarcho Levin Syndrome

Living with Jarcho-Levin syndrome This is the story of Roberto “Papo” Lugo born August 21,1992 . My son Roberto just celebrated his 1 9th birthday… Continue reading Living with Jarcho Levin Syndrome

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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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