Skip to Accessibility Menu Skip to Login Skip to Content Skip to Footer

Tell us about your symptom and treatment experience. Take our survey here.

Forums

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

How to deal with extremely tough days?

Mast Cells trigger my self

anyone else have Mast cell and histamine problems? hot and cold intolerance?...

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...

Where do you find support?

Who supports you in a meaningful way? What does their support look like? As you have moved along your rare disease journey, has the type of support you need changed...

Undiagnosed still but something is wrong

Hi, I know there’s something going on, but doctors dismiss me, don’t listen, or tell me they don’t know what’s wrong but admit there’s something but tell me they can’t...

Featured

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...

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...

Animal Companions

Do you have a pet that has helped you cope with life with a rare disease? Tell us about them and/or share a pic!...

Rare Disease Clinical Trials

Have you explored or participated in a clinical trial? What unique challenges do rare disease patients face when it comes to trials? Let this be a place to ask questions...

Burning ear syndrome

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

Categories

Select a category to find topics that interest you.