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

Awake but trapped

I’m awake, fully aware that I cannot move. No idea how long it will last? Will I stop breathing? Nobody home for...

At 77,my long life with Hypermobile Ehlers-Danlos Syndrome Is beyond painful; others can’t see it

Has Anyone Here Been Diagnosed with Retinitis Pigmentosa?

Has anyone here been diagnosed with Retinitis Pigmentosa (RP)? It’s a rare inherited retinal disease that often starts with night vision problems...

APLAID

I’m a patient of the NIH. I don’t believe there is anyone else out there with this disease besides my daughter and...

People do not understand that fatigue is different from exhaustion.

Having a disease without a name

Greetings, I have what may be an autoinflammatory disorder vs an unlabeled rare condition that affects my barrier to inflammation. We found...

Featured

Biggest challenges you face in your current journey?

Hi- I'm just curious about how people navigate this journey well. What are your biggest challanges and support needs? Where do people...

Unknown Health conditions that is so discormforting

Hi, everyone I woke up one morning to notice that I have a burning sensation on one of my legs. I thought...

Goosebumps with most emotions/passion, sneezing, yawning..

Since march of this year, every time I cried, goosebumps all over my left side of my body. Over the last few...

Invisible Illness

What aspects of your rare disease are invisible to others?...

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