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

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 lump on different parts of the body ...

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 this or a similar situation ever happen to...

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 admit there’s something but tell me they can’t...

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What fills your cups on hard days?

Living with a rare disease or caring for someone who has one can be challenging. We want to know how you keep your own cup full while navigating difficult symptoms...

What helps you avoid burnout or chronic illness fatigue?

Personal Strategies – What routines, habits, or lifestyle changes help you avoid burnout or fatigue? (e.g., sleep, nutrition, mindfulness)...

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 the anomalies make life and especially medical treatment...

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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 elevated level of phytanic and pristanic acid in...

Please help my wife, she has a disease that is difficult to diagnose

Symptoms include crooked tongue, difficulty swallowing, bloody sputum, and headaches from the back of the head to the top of the head and eye sockets. The pain lasts for about...

This is not my child that has a Rare illness, It is me.

How to deal with extremely tough days?

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