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

Active 2 days ago

I wish others knew that...

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

Active 2 days ago

Hurler syndrome

My one-year old granddaughter has just been diagnosed with Hurler syndrome (MPS1). To say I am devastated is an understatement. I can;t stop crying. I feel so sorry for my...

Active 7 days ago

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...

Feeling isolated and alone with a severe rare disease

My husband and I have tried to do many things to support our daughter diagnosed with metachromatic leukodystrophy, rare terminal brain disease 3.5 years ago. Since she has become very...

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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...

Invisible Illness

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

Art to cope with your rare disease

Do you use art or creative outlets to cope with your rare disease? If so, please share your favorite projects with us below!...

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...

CMT type 4c1, hEDS, PsA, Fibro, Ichthyosis

I wish Drs wouldn't laugh off multiple diseases. Even a dna test didn't help. " only thier clinical opinion matters, not a dna test. I paid for my own dna...

The Weight of Rare Disease

This giveaway has closed but we still welcome community members to share their perspectives. Living with a rare disease comes with challenges that many people may not fully understand. Beyond...

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