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

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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...

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

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 today

Unexplained Night sweats

I have been experiencing night sweat every night basically ever since my diagnosis with NMO. Im wondering have anyone else experienced un explained night sweats. I have had all kind...

Active 6 days ago

Does anyone have olgilvie syndrome?

Does anyone have olgilvie syndrome and what did Dr say prognosis was? This is very rare from what we were told....

Active 6 days ago

Transitioning From Pediatric to Adult Care

Does anyone have experience with transitioning from a pediatric healthcare team to and adult care team? Do you have any tips for others navigating this, either as a patient or...

Active 6 days ago

Blood Test

Had a Parathyroid Test today. Came back high. Should I be worried?...

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

Addison's Disease

Most people have never heard of Addison's Disease or know what adrenal glands are and what they do. I have a little information about it, but not much. I was...

Active 6 days ago

Hypoglobulimia

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

Active 6 days ago

Red rash in my mounth

I have red "rash" or something in her mounth for more then 2 months. What do you think this is?...

Active 6 days ago

Workplace Experiences

Has your rare disease impacted you in the workplace? What kind of experiences (positive or negative) have you had with disclosing to managers or coworkers?...

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