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

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Unexplained Night sweats

I have been experiencing night sweat every night basically ever since my diagnosis with NMO. Im wondering have anyone else experienced un explained night sweats. I have had all kind...

Active 6 days ago

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, progressive vision loss. It typically starts with difficulty...

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...

What does advocacy mean to you?

Advocacy can take many different forms - raising awareness in your local community, sharing on social media, and taking legislative action are just a few examples. Are you involved or...

Hope for Cushing’s Disease

I was diagnosed with Cushing’s disease in ‘98. Textbook case with everything effected. Pituitary resection lead to reoccurrence so I had Gamma Knife. I went into remission and ended up...

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...

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...

Mast Cells trigger my self

anyone else have Mast cell and histamine problems? hot and cold intolerance?...

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...

Is there anybody in the medical field that understands ultra rare duchenne muscular dystrophy of the phenotype sex inherited with skewed markers

I just want to let the world know that there is a cluster family all living females symptomatic with DMD symptomatic as well as the boys only research and studies...

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