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

Hurler syndrome

My one-year old granddaughter has just been diagnosed with Hurler syndrome (MPS1). To say I am devastated is an understatement. I can;t...

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...

Stange constellation of symptoms - anyone had a similar experience and found a diagnosis or effective treatment?

Hello, I've been struggling for years now with massive changes in my body, and I'm really worried for my health, as I...

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...

Anyone Had a Rare Eye Condition First Spotted During a Routine Eye Exam?

I recently went in for a standard eye test, thinking I needed a new prescription, but the optician noticed something unusual. I...

Dystonia, epilepsy or something else?

I gave been having worsening bilateral facial spasms 1-3x per day that last 2-5 minutes. They are preceded by light nausea and...

Undiagnosed: chest tightness and pressure in head

For the last 3 years my male partner of 8 years, who appears perfectly healthy, has been plagued by unexplained symptoms that...

Undiagnosed all season cold sensation of body

I'm 59 and I have a condition for over last 10 years that is now immensely impacting quality of my life. I...

Awake but trapped

I’m awake, fully aware that I cannot move. No idea how long it will last? Will I stop breathing? Nobody home for...

At 77,my long life with Hypermobile Ehlers-Danlos Syndrome Is beyond painful; others can’t see it

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