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

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Biggest challenges you face in your current journey?

Hi- I'm just curious about how people navigate this journey well. What are your biggest challanges and support needs? Where do people go to get support? What actually makes a...

Featured

What fills your cups on hard days?

Living with a rare disease or caring for someone who has one can be challenging. We want to know how you keep your own cup full while navigating difficult symptoms...

Active today

Wisdom Teeth Removal

Hi Everyone, I hope you are all doing ok. I am just looking for some guidance. My son is 21, has had Addison's since he was 5 and is about...

Active today

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 your thoughts or experiences about accessibility in the...

Active yesterday

Invisible Illness

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

Active 4 days ago

I wish others knew that...

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

Active 6 days ago

Goosebumps with most emotions/passion, sneezing, yawning..

Since march of this year, every time I cried, goosebumps all over my left side of my body. Over the last few months it’s escalated, to goosebumps all over my...

Unknown Health conditions that is so discormforting

Hi, everyone I woke up one morning to notice that I have a burning sensation on one of my legs. I thought it was a slight stuff. Over time some...

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...

Anyone Had a Rare Eye Condition First Spotted During a Routine Eye Exam?

I recently went in for a standard eye test, thinking I needed a new prescription, but the optician noticed something unusual. I was referred for further tests, and now the...

ALS

My 70 year old husband was diagnosed with ALS 1 month ago. He has dementia as well. He doesn't comprehend what's going on or what's wrong with him. He knows...

Kidney Transplant/Primary Immune Deficiency

Hi all! Feeling rather alone. I had a kidney transplant because I have Compliment 3 Glomerulopathy. I also have Common Variable Immune Deficiency. The balance of that disease with my...

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