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

Active 5 days ago

Anyone Had a Rare Eye Condition First Spotted During a Routine Eye Exam?

I recently went in for a standard eye test, thinking I needed a new prescription, but the optician noticed something unusual. I was referred for further tests, and now the...

Active 6 days ago

APLAID

I’m a patient of the NIH. I don’t believe there is anyone else out there with this disease besides my daughter and myself. Has anyone body be diagnosed with APLAID...

What are some of the biggest accessibility challenges you face in your daily life due to your rare disease?

Accessibility is a crucial part of living with a rare disease, and your experiences can be varied yet also relatable. Consider sharing your thoughts or experiences about accessibility in the...

The Weight of Rare Disease

This giveaway has closed but we still welcome community members to share their perspectives. Living with a rare disease comes with challenges that many people may not fully understand. Beyond...

How can OCT and retinal photography reveal eye diseases before you even notice symptoms?

OCT (Optical Coherence Tomography) and retinal photography are advanced imaging techniques that allow eye doctors to see beneath the surface of your retina in incredible detail. They can detect microscopic...

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 to see and what effect you hope it...

How can we support you?

What information do you hope to find on our site? Is there anything in the rare community as a whole you would like to see more of?...

VEXAS - In Honor of Max Gyllenskog Part 1

Here's part 1 of a series I'm working on to try to help other people understand this disease as I'm learning it, in an easier way. I hope you will...

VEXAS - In Honor of Max Gyllenskog Intro

VEXAS Syndrome: Spread the Word When Max Gyllenskog first began experiencing significant health issues, the puzzling array of symptoms left everyone baffled. It started with a blood clot in his...

Dealing w more than one

Hi, I'm happy to have run across this email, community forum. I currently suffer with HS & also Hydrocephalus. These are two rare diseases. How did I get both... Guess...

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