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Rare disease day

Feb 24, 2019 11:49 AM

Thought everyone would like to know rare disease day is 28th February so get the word out about your conditions and spread awareness

Mar 01, 2019 6:24 PM

Are you dealing with a blood disorder? I have essential thrombocytosis which is extremely high platelets putting me at a very high risk for stroke. This also causes alot of pain similar to sickle cell patients.

Mar 02, 2019 9:08 AM

I know it is not a disease but I haven’t come across a rare syndrome day yet

Mar 07, 2019 11:25 PM

A1 alpha-trypsin- moderate phenotype
Liver n lung issue through genetics

Mar 10, 2019 12:39 AM

Factor 5 Leidon; a blood disorder which effects your blood clotting and can cause blood clots especially in your legs. My niece has it as well as all of us girls in my family.Genetic predisposition.

Mar 13, 2019 9:23 AM

Nemaline myopathy 🙁

Mar 21, 2019 1:59 AM

Small fiber neuropathy but it’s only rare because the test is very new. They think many fibromyalgia patients have SFN. Thanks for the heads up on zebra day!

Mar 25, 2019 11:11 AM

MTHFR Gene defect, which makes my body not metabolize or absorb folate, vitamin B9. This in turn affects my body's ability to fight depression, which I've been suffering from since childhood but want diagnosed until 1988; the MTHFR Gene defect was diagnosed in 2013.

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