Forums

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

The lines on the iris of the eyes are irregular.

Hello, everyone. I'm a new member who just joined recently. I have obvious dry eye syndrome. I often have a foreign body...

Navigating Exercise with a Rare Disease: What works for you?

Living with a rare disease often means standard fitness advice just doesn't apply to you. We'd love to start a conversation about...

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What is your go-to item or ritual for finding physical comfort during a flare-up or a hard health day?

Whether it’s a specific pillow, a favorite tea, a warm bath, or a cozy blanket, we want to know what brings you...

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....

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