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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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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...

Beta Thalassemia

I’ve gone through growth (extra long arms) and bone problems, enlarged spleen and liver, heart problems (like arrhythmias and heart failure from...

Common Variable immune deficiency

I was ill from birth. Was not diagnosed until 45 years old. I have damage to my lungs from many infections. Two...

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