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

Active yesterday

I wish others knew that...

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

FeaturedActive 3 days ago

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...

Active 4 days ago

Lymphangioleiomyomatosis (LAM)

I am diagnosed with Lymphangioleiomyomatosis or LAM & asthma. Looking for others that have the same thing....

Active 6 days ago

How can we support you?

What information do you hope to find on our site? Is there anything in the rare community as a whole you would like to see more of?...

Active 6 days ago

Coping

I'm newly diagnosed and my steroids We're reduced to soon which caused a flare up. Been advised to up steroids which I have . I'm still have bad pain ...

Active 6 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 3.5 years ago. Since she has become very...

I am diagnosed with both Neuromyelitis Optica and Myasthenia Gravis. I am searching for others with the same diagnosis.

Having both Myasthenia Gravis and Neuromyelitis Optica is extremely difficult. Find medications that address these diseases is an ongoing problem. I would appreciate any advice or feedback. I am also...

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...

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...

Looking for fellow giants

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

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