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.

Rare Diagnosis Experiences

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

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?...

Pola1 gene variation

Hello, I would like to connect with a family who has a child with POLA 1 gene variation, specifically Van Esch-O'Driscoll Syndrome, my son has this variation....

Doctors can not figure out wife's medical issue

After over a year of testing they still can not figure out what is wrong. My wife had had roughly 8 cat scans, erg, colonoscopy, gastric emptying, mri, biopsys and...

Bones in head constantly keep feeling like they swelling.

For past 12 years I have had the sensation in my head that my skull is swelling.I also have a extremely itchy scalp and my face is constantly burning with...

METHEMOGLOBINEMIA: AN UNCOMMON HEMOGLOBIN DISORDER"

METHEMOGLOBINEMIA DEFINITION Methemoglobinemia is a blood disorder where an unusual quantity of methemoglobin is generated. Methemoglobin is a formation of hemoglobin in which the iron in the heme group is...

Categories

Select a category to find topics that interest you.