Forums

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

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How Do You Manage Weight Changes When Living With a Chronic Health Condition?

Weight management can be difficult when you’re also dealing with a chronic health condition. Things like medication, activity levels, sleep, stress, appetite...

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Newly diagnosed with Sweets Syndrome

I was diagnosed with Sweets Syndrome in June. I am curios about how people live with symptoms, reoccurrence, etc....

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Invisible Illness

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

Active 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...

Active 6 days ago

What helps you avoid burnout or chronic illness fatigue?

Personal Strategies – What routines, habits, or lifestyle changes help you avoid burnout or fatigue? (e.g., sleep, nutrition, mindfulness)...

Active 7 days ago

I wish others knew that...

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

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...

Congenital short pedicles on MRI after a 2019 injury — anyone else dealing with this?

Back in 2019, I had an accident at work where I was sideswiped by two pregnant sows. When I got my MRI...

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?...

Working with disease

I’m starting a new job today. It’s a remote, part-time position that pays well, but it doesn’t offer any benefits. I have...

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