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

How to deal with extremely tough days?

Animal Companions

Do you have a pet that has helped you cope with life with a rare disease? Tell us about them and/or share...

Rare Disease Clinical Trials

Have you explored or participated in a clinical trial? What unique challenges do rare disease patients face when it comes to trials?...

Can glaucoma develop even if your eye pressure is normal?

Yes. This condition is called normal-tension glaucoma, and it occurs when the optic nerve is damaged despite having eye pressure within the...

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...

Lymphangioleiomyomatosis (LAM)

I am diagnosed with Lymphangioleiomyomatosis or LAM & asthma. Looking for others that have the same thing....

Recently been diagnosed

With dermatomyositis, unfortunately I've been suffering now from it for almost 4 years. I have athrophy my thinking space isn't what it...

How to get diagnosed?

Hello. I have a rare disease no one has heard of. I've tried to get into a rare disease clinic but they...

Romantic Partnerships

Has your rare disease impacted your romantic relationships? What challenges or successes have you encountered?...

Urgent Help Needed: Undiagnosed Condition in 8-Month-Old with Severe Symptoms

Hello everyone! I'm posting on behalf of a friend in China whose 8-month-old son has been battling severe, unexplained symptoms since he...

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