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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...

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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...

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Invisible Illness

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

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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...

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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...

Active 4 days ago

Sweet Syndrome

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

Active 5 days ago

I wish others knew that...

What is one thing you wish more people knew about living with a rare disease?...

How to deal with extremely tough days?

Does any have a rarer type of EDS?

I was just diagnosed with EDS and Dysautonomia. I'm still unsure which types, though and I'd like to know people's experiences....

Getting doctors to understand

I spent 10 years of my life in excruciating pain. The last two years of my life I considered not being here...

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