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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...

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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 4 days ago

undiagnosed disease

I don't know what's going on but I'm dying...

Traveling With a Rare Disease

Tell us about your travel experiences? How do you prepare for a long or short trip? Do you have any tips to share with the community?...

Rare Diagnosis Experiences

How long did it take you to get diagnosed with your rare disease? Did you receive any misdiagnoses?...

Will you take our In America survey and help others understand the true impact of rare diseases?

The In America survey is now closed. To better understand the patient experience and realities of living with a rare disease, we are fielding our Rare Disease In America survey...

Animal Companions

Do you have a pet that has helped you cope with life with a rare disease? Tell us about them and/or share a pic!...

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Dietary Changes

Hi, I have been diagnosed with a rare genetic condition, AMACR deficiency, that so far is asymptomatic but I do have an elevated level of phytanic and pristanic acid in...

Dealing w more than one

Hi, I'm happy to have run across this email, community forum. I currently suffer with HS & also Hydrocephalus. These are two rare diseases. How did I get both... Guess...

Learning to cope w/all my medical issues

I'm new on here, hoping to have some people to chat with. I have 4pups that keep me company everyday. Hugs +snuggling are the best! I'm dealing w/6 autoimmune diseases...

My symptoms are random and cannot be detected by EMT or any fancy machine so I’m accused of faking.

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