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Read conversations, start a discussion, and connect with others about rare diseases.

Living with Mast Cell Activation

62 years young and finally finding myself... Who would I have been if I was not sick for 62 years??? Now I...

Anyone experience this and how do we get help??

My son and I started having symptoms a year and a half ago, started after a camping trip and we had a...

Aunauthorized people try to get your medical information

Hello, My deceased brother’s ex wife contacted Mayo Clinic and my brother’s attorney trying to get access to my medical records. Has...

Undiagnosed still but something is wrong

Hi, I know there’s something going on, but doctors dismiss me, don’t listen, or tell me they don’t know what’s wrong but...

Ancestral inbreeding

As a decendent of lots of inbreeding, I have many expressed recessive "rare" traits. None have proven fatal or longevity-altering (yet), but...

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Dietary Changes

Hi, I have been diagnosed with a rare genetic condition, AMACR deficiency, that so far is asymptomatic but I do have an...

Mast Cells trigger my self

anyone else have Mast cell and histamine problems? hot and cold intolerance?...

Is there anybody in the medical field that understands ultra rare duchenne muscular dystrophy of the phenotype sex inherited with skewed markers

I just want to let the world know that there is a cluster family all living females symptomatic with DMD symptomatic as...

Rare Diagnosis Experiences

How long did it take you to get diagnosed with your rare disease? Did you receive any misdiagnoses?...

Will you take our In America survey and help others understand the true impact of rare diseases?

The In America survey is now closed. To better understand the patient experience and realities of living with a rare disease, we...

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