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What are some of the biggest accessibility challenges you face in your daily life due to your rare disease?

Accessibility is a crucial part of living with a rare disease, and your experiences can be varied yet also relatable. Consider sharing...

Active 2 days ago

Medical mystery (6+ years)

I am at a loss. This has been an ongoing and progressively worsening problem for approximately six years, and it has affected...

Active 2 days ago

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 6 days ago

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...

Active 8 days ago

45 years diagnosed Scleroderma

Because outwardly I appear to be fine most people just f fr o not understand how you can look ok but be...

People do not understand that fatigue is different from exhaustion.

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...

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...

Invisible Illness

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

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