Rare Diseases Community
unbelieveable
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This patient support community is for discussions relating to rare diseases and disorders. Some example include: Aarskog syndrome, Acoustic Neuroma, Angelman Syndrome, Behcet Syndrome, Bell’s Palsy, Canavan Disease, Carbon Baby Syndrome, Charcot Marie Tooth Disease, Chromosome Monosomy Disorders, Chromosome Trisomy Disorders, Devic's Disease, Dystonia, Ewing’s Sarcoma, Fragile X Syndrome, Immune Thrombocytopenia, Kawasaki Syndrome,Maple Syrup Urine Disease, Mastocytosis, McCune Albright syndrome, Pachygyria, Polycystic Kidney Disease, Prader-Willi Syndrome, Reiter’s Syndrome, Sickle cell anemia, Sturge-Weber syndrome, Trisomy Disorders, Usher Syndrome, Xanthinuria, Zollinger-Ellison syndrome.

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unbelieveable

well get on this.. ive searched for years for my daughters goldberg and shprintzen syndrome. she not......oh my bloody god so not well and for the first time in 15 years i approached a site called unique dealing with rare syndromes and ye know what they said.....they cant help me HA      i lost my eldest 13 years ago aged 4.  same genetic syndrome.  my god. finally ask for help and get fffkd off whats that about? bet no one can help me.                                       talk about rare. anyone know anything?i wont hold my breathe.but it wont stop me trying
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