Forums

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

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Being the caregiver and also the patient

I was diagnosed with Myasthenia Gravis a little over a year ago. My husband has Sjogren's, Hashimoto's and Parkinson's disease and I...

Active today

Struggling to find a doctor to help

On January 12, 2025, I was diagnosed with something called Eagle Syndrome. That is the easy name for it. Basically, there's a...

Active 2 days ago

Welcome! Let's Get to Know Each Other.

We are glad you are here! Please introduce yourself and let us know which rare disease impacts your or your loved one's...

Active 3 days ago

I wish others knew that...

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

Active 5 days ago

Invisible Illness

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

Active 8 days ago

Newly diagnosed with Sweets Syndrome

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

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...

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?...

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