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

Active today

Where do you find support?

Who supports you in a meaningful way? What does their support look like? As you have moved along your rare disease journey...

Active 3 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...

Active 7 days ago

I wish others knew that...

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

How Do You Cope?

Does anyone have tips or things that help you cope with living with a rare disease? What do you do to manage...

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...

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...

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...

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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...

Invisible Illness

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

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...

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