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

I have Myasthenia Gravis and Parkinsons

I would like to find someone else or a group that I can discuss my symptoms and problems with. Some of my symptoms kind of get "mixed up" with other...

Anyone have any advice about CIP?(Congenital Insensitivity to Pain)

I am the caregiver of a person with CIP. As he gets older, the challenges he faces have become more concerning. Does anyone have any suggestions on support groups, doctors...

Looking for fellow giants

Hoping to get a better understanding of Acromegaly and find others with the condition.....

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...

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...

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...

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...

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