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

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Does anyone here have Mast Cell Activation Syndrome?

Trying to decipher if I should be avoiding My Trigger Foods altogether or if it's not The Top Couple of Ingredients I can eat it, or if it doesn't cause...

Active 6 days ago

What do you guys think this is

I have a couple of things going on but I don’t have a diagnosis yet but wanted to see what you all think is going on. I have drop foot...

Active 6 days ago

Hypoglobulimia

Just wondering how many others have this, mine was med induced....

Adrenal hormones

Hi, I'm 25 y.o. male. I have doubts that I'm producing too much adrenaline. I checked all my hromones from endocrine system. Everything is fine. The problem is that in...

High red cells and tired constantly.

I have morphea and a spinal malformation, constantly sore points underneath each morphea patch, muscle spasms, tiredness and watery vision. I have a high red cell count, it's at the...

Having a disease without a name

Greetings, I have what may be an autoinflammatory disorder vs an unlabeled rare condition that affects my barrier to inflammation. We found treatments that generally work and keep me off...

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...

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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...

Healthcare navigator specializing in rare diseases

I’m a physician-turned healthcare navigator specializing in rare diseases. Visit my website and blog at maryrodriguezmd.com...

The Weight of Rare Disease

This giveaway has closed but we still welcome community members to share their perspectives. Living with a rare disease comes with challenges that many people may not fully understand. Beyond...

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