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

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Struggling to find a doctor to help

On January 12, 2025, I was diagnosed with something called Eagle Syndrome. That is the easy name for it. Basically, there's a...

Active today

People do not understand that fatigue is different from exhaustion.

Active yesterday

how have y'all been coping with fear, insomnia, due to being in remission?

I was diagnosed with nsclc and subsequently found out I have myasthenia gravis as well. The meds they give me for the...

Active 2 days ago

I wish others knew that...

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

Being the caregiver and also the patient

I was diagnosed with Myasthenia Gravis a little over a year ago. My husband has Sjogren's, Hashimoto's and Parkinson's disease and I...

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...

Invisible Illness

What aspects of your rare disease are invisible to others?...

Newly diagnosed with Sweets Syndrome

I was diagnosed with Sweets Syndrome in June. I am curios about how people live with symptoms, reoccurrence, etc....

How Do You Manage Weight Changes When Living With a Chronic Health Condition?

Weight management can be difficult when you’re also dealing with a chronic health condition. Things like medication, activity levels, sleep, stress, appetite...

Dealing w more than one

Hi, I'm happy to have run across this email, community forum. I currently suffer with HS & also Hydrocephalus. These are two...

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