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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 yesterday

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...

Active yesterday

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?...

Active yesterday

Has Anyone Heard of Retinitis Pigmentosa? Rare Eye Disease Discussion

Hi everyone, I recently came across Retinitis Pigmentosa (RP) , a rare genetic eye disease that affects the retina and causes slow, progressive vision loss. It typically starts with difficulty...

Active yesterday

Weird disorder that is causing a lot of pain and discomfort

I need help looking for a place to start researching whatever medical condition that has me bedridden almost all day and night. For some reason I experience varying amounts of...

Active 3 days ago

Madelung's

I am helping a friend in Gulf Breeze, Florida (next to Pensacola) who is suffering from benign symmetric lipomatosis (Madelung’s disease) He does not use the internet. His neck and...

Active 3 days ago

Ehlers Danlos and Epydermilosis Bulosis

I was born in 1958. I had two rare diseases Ehlers Danlos and Epydermilosis Bulosis but neither were severe.It took until 2004 to see a Geniticist before they were both...

Active 3 days ago

Podcast opportunity for Rare Disease Patients

I have a podcast called Rare connections on YouTube. If any rare disease advocates are interested in talking about their rare condition please message me....

Active 3 days ago

I have Myasthenia Gravis and Parkinsons

I would like to find someone else or a group that I can discuss my symptoms and problems with. Some of my symptoms kind of get "mixed up" with other...

Active 3 days ago

Anyone have any advice about CIP?(Congenital Insensitivity to Pain)

I am the caregiver of a person with CIP. As he gets older, the challenges he faces have become more concerning. Does anyone have any suggestions on support groups, doctors...

Active 3 days ago

Looking for fellow giants

Hoping to get a better understanding of Acromegaly and find others with the condition.....

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