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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 8 days ago

Undiagnosed with neurological symptoms and multiple misdiagnoses

Hi folks! I'm currently seeing a neurologist, who is giving me multiple tests to see what rare disease I may have. About a year ago, I started randomly slurring my...

METHEMOGLOBINEMIA: AN UNCOMMON HEMOGLOBIN DISORDER"

METHEMOGLOBINEMIA DEFINITION Methemoglobinemia is a blood disorder where an unusual quantity of methemoglobin is generated. Methemoglobin is a formation of hemoglobin in which the iron in the heme group is...

Recently been diagnosed

With dermatomyositis, unfortunately I've been suffering now from it for almost 4 years. I have athrophy my thinking space isn't what it was and the biggest challenge has been getting...

1 year later, no diagnosis

Mom looking for support...It's been a little over a year since all this started. 2 hospital stays each 1 week long. First both hospitals showed results positive for scleroderma, (and...

How to get diagnosed?

Hello. I have a rare disease no one has heard of. I've tried to get into a rare disease clinic but they require a diagnosis. How do you get a...

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...

Invisible Illness

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

Romantic Partnerships

Has your rare disease impacted your romantic relationships? What challenges or successes have you encountered?...

Do you allow your child with a rare disease to go on overnight school field trips?

If so, what tips have worked for you and your child? How did you prepare your child and yourself for this experience? Please share your insights or personal anecdotes below....

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