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My son had 2 rare diseases

My son was born with Chondrodysplasia Punctata (CDPX1) a rare form of dwarfism and Epidermolysis Bullosa Simplex (EB). EB kids are known as Butterfly kids… Continue reading My son had 2 rare diseases

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Familial Hereditary Cold-Induced Urticaria

Vivian 60 Years Old I have Familial Hereditary Cold-Induced Urticaria. This very long name is another way of saying, I am literally allergic to the… Continue reading Familial Hereditary Cold-Induced Urticaria

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We must do something MORE!!!

Hi! We are from Belgrade,Serbia,Europe..Our son is a five and a half years old boy,who was totally healthy kid,when in a july 2016 he get… Continue reading We must do something MORE!!!

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Family Facing 2nd Rare Disease Fights For The Life of Their Youngest

My name is Catriona Humphrey and I have been a parent to four beautiful children for almost twenty years; however, these last few months have… Continue reading Family Facing 2nd Rare Disease Fights For The Life of Their Youngest

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IBM with Dysphagia

There is 3of us in Shepparton area ,it is a muscle degenerative disease with no cure rare .We have infusions Ivigevery 3-4weeks .can give you… Continue reading IBM with Dysphagia

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Ask Me About Autoimmune Hepatitis (AIH)

Hey, everyone! It’s that time of year, again. Time to raise awareness for Rare Disease Day on February 28th. Living with a rare disease isn’t… Continue reading Ask Me About Autoimmune Hepatitis (AIH)

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Camurati Englemanns Disease

I am 15 years old and have lived with Camurati Englemanns disease all of my life. As of now there is 1 in a million… Continue reading Camurati Englemanns Disease

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TMAU: Fish Odor Disease

Hello, if you read all of this thank you. I’m Tj. 21 year old from Southern California. And about 2-3 years ago I’ve had this… Continue reading TMAU: Fish Odor Disease

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An unexpected answer.

Our son was born perfect and healthy 3 years ago. He walked late but met all other milestones. We noticed that he was very clumsy… Continue reading An unexpected answer.

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