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

Sheehans

Does anyone have this besides me?...

Coping

I'm newly diagnosed and my steroids We're reduced to soon which caused a flare up. Been advised to up steroids which I have . I'm still have bad pain ...

How can we support you?

What information do you hope to find on our site? Is there anything in the rare community as a whole you would like to see more of?...

I wish others knew that...

What is one thing you wish more people knew about living with a rare disease?...

Rare Blood Cancer: Waldemstroms Macglobanemia

Living with a rare blood cancer is challenging. On a BTK Inhibitor has to be careful of side effects. Trips to Boston from North Carolina at least every three months...

Symptoms of Eye Vision Damage?

Eye vision damage can present with a variety of symptoms, depending on the underlying cause and severity. Common signs include blurred or distorted vision, which may make it difficult to...

Recognizing the Symptoms of Eye Conditions

Understanding the symptoms of various eye conditions can help in early detection and treatment, preserving vision and eye health. Common symptoms such as blurred vision, eye pain, redness, floaters, and...

Coping with books

I fill up my cup by reading. I love science fiction specifically, because it tells us about building the future...

Welcome! Let's Get to Know Each Other.

We are glad you are here! Please introduce yourself and let us know which rare disease impacts your or your loved one's life....

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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