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

Active today

Have you ever seen your rare disease represented in the media?

How did it make you feel? Did you feel it was an accurate depiction? Tell us more about what you would like...

Active today

Anyone have this? It’s really distressing.

I’m wondering if anyone else has experienced something similar, especially at night or around sleep. I’ve been having episodes involving a strong...

Active yesterday

Feeling alone

I have Microscopic polyangiitis, a form of vasculitis that closes up my small blood vessels. Mostly in my kidneys, lungs and intestines...

Active yesterday

Do you consider yourself to have an invisible illness?

What aspects of your rare disease are invisible to others? Share in the comments below....

Active 3 days ago

15 years no closer to answer's

Hi everyone, I'm just winging it and reaching out to the Internet today to ask if anyone knows anyone or any conditions...

Active 3 days ago

That I can control my symptoms if I make an effort

Active 3 days ago

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

Active 3 days ago

Trying to make complex care feel less overwhelming

Trying to make complex care feel less overwhelmingI keep thinking about something I’ve seen over and over in complex care: the care...

Active 7 days ago

How Do You Cope?

Does anyone have tips or things that help you cope with living with a rare disease? What do you do to manage...

Invisible Illness

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

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