Forums

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

Romantic Partnerships

Has your rare disease impacted your romantic relationships? What challenges or successes have you encountered?...

People do not understand that fatigue is different from exhaustion.

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...

Art to cope with your rare disease

Do you use art or creative outlets to cope with your rare disease? If so, please share your favorite projects with us...

Looking for board members for a nonprofit

I have a podcast called rare connection, I am trying to turn it into a nonprofit. With my podcast I am connecting...

Burning ear syndrome

I began noticing 1 ear red and not the other rarely both ears, the red ear will get warm...

Undiagnosed insane symptoms

1st time here. I desperately need help as to why I go numb and loss bodily function and become extremely dizzy if...

How can we support you?

What information do you hope to find on our site? Is there anything in the rare community as a whole you would...

Dietary Changes

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

Caring for a child with a rare disease

This forum is for anyone caring for a child with a rare disease. Introduce yourself, ask a question, or share a story....

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