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

Forums

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

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...

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 yesterday

Urgent Help Needed: Undiagnosed Condition in 8-Month-Old with Severe Symptoms

Hello everyone! I'm posting on behalf of a friend in China whose 8-month-old son has been battling severe, unexplained symptoms since he was just 2 months old. These symptoms include...

Active yesterday

Undiagnosed with neurological symptoms and multiple misdiagnoses

Hi folks! I'm currently seeing a neurologist, who is giving me multiple tests to see what rare disease I may have. About a year ago, I started randomly slurring my...

Active 2 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 2 days ago

my life with Polymyositis

About 7 years ago (I was 77 then) I began noticing body weakness, first, gentle, then more acute. I needed a cushion or two to rise from a chair, needed...

Active 6 days ago

Rare Diagnosis Experiences

How long did it take you to get diagnosed with your rare disease? Did you receive any misdiagnoses?...

Active 8 days ago

Dermatomyositis

I don’t know anybody else who has dermatomyositis. It is hard wearing all the stuff I need to in order to keep the sun off my skin and explaining this...

Dealing w more than one

Hi, I'm happy to have run across this email, community forum. I currently suffer with HS & also Hydrocephalus. These are two rare diseases. How did I get both... Guess...

APLAID

I’m a patient of the NIH. I don’t believe there is anyone else out there with this disease besides my daughter and myself. Has anyone body be diagnosed with APLAID...

My disease

I have pulmonary fibrosis. I was diagnosed in 2001.. and told I would be dead 'by this time next week '!! I was coerced by the Dr. involved.. into having...

What life lessons or advice is important to pass on to children and young adults living with a rare disease?

What can parents and caregivers do to help set their children up for success as they grow up? What has been helpful in your family?...

Categories

Select a category to find topics that interest you.