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Forums

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

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....

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?...

Looking for rare disease advocates for a podcast.

I have a podcast called Rare Connection. I am trying to connect rare disease patients with others with the same or similar conditions with it, educate medical professionals and the...

Medical Mystery - Can anybody help?

My current symptoms: Extreme fatigue and tiredness throughout the entire day Dissociation / feeling of faintness Extreme mental fatigue and brain fog Trouble concentrating and poor memory This all started...

Unknown pain disease?

Looking for help with my condition. After seeing multiple Dr’s the past three years and the last being a neurologist. It’s a mystery as to what is going on. These...

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