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Being a carer and at risk of a rare disease.

I have been a carer for my father for around ten years ! He suffers from Huntington’s DISEASE which is a rare genetic disorder. Yes… Continue reading Being a carer and at risk of a rare disease.

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Lupus

I was diagnosed 9yrs ago with lupus profundos a rare skin disease.. I have been trying to get a diagnosis of systemic lupus but because… Continue reading Lupus

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Logan’s Life

My son Logan has a Rare Chromosome Disorder an Unbalanced Translocation of chromosomes 1 and 8. He has several medical problems and a great deal… Continue reading Logan’s Life

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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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