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

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...

Hundreds of thousands of dollars spent across multiple years and still not diagnosed.

My partner has been suffering from chronic nausea and vomiting for years at this point, every single common cause has been ruled...

Experience with normal pressure juvenile glaucoma?

I have low/normal pressure juvenile onset open angle glaucoma that was ~11 years late diagnosed. It’s medication resistant and my next option...

Where do you find support?

Who supports you in a meaningful way? What does their support look like? As you have moved along your rare disease journey...

Finding a specialist

I learned I not only have osteonecrosis in both my hips, but also my left knee. All due to high doses of...

Exercise and Chronic Fatique and Pain

I have been going to physical therapy force weeks now after loosing excessive weight. I had severe protein malnourishment and severe muscle...

Caring for a child with a rare disease

This forum is for anyone caring for a child with a rare disease. Introduce yourself, ask a question, or share a story....

What is the most annoying unsolicited advice you've heard?

What annoying or unhelpful suggestions are you most tired of receiving (unsolicited!) from other people?...

Unknown Health conditions that is so discormforting

Hi, everyone I woke up one morning to notice that I have a burning sensation on one of my legs. I thought...

People do not understand that fatigue is different from exhaustion.

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