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

Active 3 days ago

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...

Seeking others with Houge-Janssens Syndrome

Hello. My son received a diagnosis of Houge-Janssens Syndrome type 3. It is caused by a mutation in the gene designated PPP2CA...

Has Anyone Heard of Retinitis Pigmentosa? Rare Eye Disease Discussion

Hi everyone, I recently came across Retinitis Pigmentosa (RP) , a rare genetic eye disease that affects the retina and causes slow...

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...

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...

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...

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...

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...

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...

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...

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