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

How Do You Cope?

Does anyone have tips or things that help you cope with living with a rare disease? What do you do to manage symptom, treatment, or other challenges?...

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...

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...

Featured

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...

Invisible Illness

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

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?...

Sheehans

Does anyone have this besides me?...

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 ...

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?...

I wish others knew that...

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

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