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

Active 4 days ago

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...

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...

How to Be a Great Friend to Someone Living With a Rare Disease

What characteristics, behaviors, and kindnesses mean the most to you from people who are not living with a rare disease?...

Holidays with a Rare Disease

The holidays can be exciting but also come with many challenges for those with rare diseases. What special considerations do you have...

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