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

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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...

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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...

Active yesterday

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 4 days ago

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...

Active 6 days ago

Happy New Year ❤️

Id like discuss topics about rare combination Cardiac Amyloidos and Multiple Myeloma...

Invisible Illness

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

Traveling With a Rare Disease

Tell us about your travel experiences? How do you prepare for a long or short trip? Do you have any tips to...

How to deal with extremely tough days?

Featured

Dietary Changes

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

Help with mysterious hand condition + gut condition

Hi, please I need your help. I am dealing with a mysterious condition in my hands (under the skin) that seems completely...

Sweet Syndrome

As I mentioned in my previous post, it took nearly 9 years to be diagnosed with Sweet Syndrome. I spent the first...

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