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

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?

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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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Dietary Changes

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

Sweet Syndrome

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

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...

45 years diagnosed Scleroderma

Because outwardly I appear to be fine most people just f fr o not understand how you can look ok but be...

Experience with Rare Eye Diseases like Retinitis Pigmentosa?

I recently learned about Retinitis Pigmentosa (RP), which is a rare inherited eye disease that slowly affects the retina and can lead...

How does someone get a diagnosis without understanding what's going on?

I have been on a diagnosis journey for two to three years. My primary symptoms are syncope, joint and muscle pain, and...

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