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

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...

Learning to cope w/all my medical issues

I'm new on here, hoping to have some people to chat with. I have 4pups that keep me company everyday. Hugs +snuggling...

My symptoms are random and cannot be detected by EMT or any fancy machine so I’m accused of faking.

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