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

FeaturedActive 8 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...

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 your own cup full while navigating difficult symptoms...

Active today

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 the dog to alert, so I lay here,letting...

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 4 days ago

Feeling pure psychological discomfort after being on medication

Hi everyone! I am currently on Effexor, Seroquel and Risperidal. I have been on Effexor since Janauary 2024, Risperidal since March 2024, and Seroquel since November 2024. I have been...

Active 4 days ago

Burning ear syndrome

I began noticing 1 ear red and not the other rarely both ears, the red ear will get warm...

Active 7 days ago

Patient of HHT and Mom of child with HHT

I was diagnosed with HHT (a rare blood vessel disorder) in 2023 after 4 years of searching for answers. My son was diagnosed a year later. I receive Feraheme iron...

Active 7 days ago

Life with Rare Coexistence of Systemic Lupus and Ankylosis Spondylitis

Hello, I just curious to find the other 8 - 10 individuals living with the Rare Coexistence of Systemic Lupus and Ankylosis Spondylitis (Axial for me ). Tbh, living with...

Active 8 days ago

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?...

Active 8 days ago

lichen sclerosus

I was having TERRIBLE itching in my genital area. i would explain my problem. they would say i must have vaginal infection. or yeast infection. no,no ,no. there is no...

Active 8 days ago

A Nauseating combo of disorders from birth only to worsen 14 years later

So Being born with the combination of ADHD, Autism and Tourette syndrome was bad enough only to have injury after injury then a tonsil removal surgery at 5 years old...

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