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Myhre Syndrome

Alec was diagnosed on February 3, 2017 with Myhre Syndrome after being called a medical mystery by a leading hospital for children. He made the… Continue reading Myhre Syndrome

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How I’m Using my Talents to Raise Awareness

Many people perceive one’s senior year of high school to be a time in which teenagers are creating memories that will last a lifetime with… Continue reading How I’m Using my Talents to Raise Awareness

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Het leven met CVID

Hoi ik ben Monika en ben 43 jaar en alleenstaande moeder met 2 kinderen. Van af kleins af aan ben ik al vaker ziek dan… Continue reading Het leven met CVID

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A little girl, Dung, 7, as fighted with Crouzon Sydrome since new br

In Viet Nam, we totally don’t know this rare disease. There is something wrong with our daughter. Just only later on we know CROUZON SYNDROME.… Continue reading A little girl, Dung, 7, as fighted with Crouzon Sydrome since new br

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Raynauds and Systemic Scleroderma

Diagnosed with Raynauds and Systemic Scleroderma in 1999. On no medication yet. Symptoms slighty coming on now. Going to visit Speecialists for the first time… Continue reading Raynauds and Systemic Scleroderma

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israel

Many of Neurofibromatosis (nf) does not mean anything. This is a rare genetic disease mainly in tumors all over the body, head nerves. Usually benign… Continue reading israel

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Tenho a doernça de Behçet

Chamo-me Paulo, tenho 43 anos e sofro da doença de Behçet. É uma doença inflamatória rara (HLA-B51) que me foi diagnosticada em 2013, mas que… Continue reading Tenho a doernça de Behçet

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Spasmotic Tortacolis or Cervical Dystonia Neorologic Disorder

It took so many years to be diagnosed. Tremors off the charts. Pain off the charts. Finally, DBS implantation and still, so much pain. Contortion… Continue reading Spasmotic Tortacolis or Cervical Dystonia Neorologic Disorder

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At least “Hard to Pronounce Disease” Day

Well, I guess a four-person family that has had an eosinophilic granuloma, Epstein Barr, Hashimotos, pulmonary emboli, necrotizing pancreatitis, aortic stenosis, Clostridium difficile and Proteus… Continue reading At least “Hard to Pronounce Disease” Day

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