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.

Sweet Syndrome

Any other folks with Sweet Syndrome that would like to share their experience with getting a diagnosis and treatment?...

My Journey with HER2-Positive Breast Cancer and Discovering Trastuzumab Botidotin – Anyone Else on This Path?

I wanted to share my story here because I know how isolating it can feel when you're dealing with something like HER2-positive...

seronegative gMG treatment beyond IVIG and/or Apheresis

IVIG was a fail for me (tried more than one product) and am currently receiving Apherisis every 3 weeks via an AV...

Seeking others with Houge-Janssens Syndrome

Hello. My son received a diagnosis of Houge-Janssens Syndrome type 3. It is caused by a mutation in the gene designated PPP2CA...

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...

Has Anyone Heard of Retinitis Pigmentosa? Rare Eye Disease Discussion

Hi everyone, I recently came across Retinitis Pigmentosa (RP) , a rare genetic eye disease that affects the retina and causes slow...

Hurler syndrome

My one-year old granddaughter has just been diagnosed with Hurler syndrome (MPS1). To say I am devastated is an understatement. I can;t...

Feeling isolated and alone with a severe rare disease

My husband and I have tried to do many things to support our daughter diagnosed with metachromatic leukodystrophy, rare terminal brain disease...

Stange constellation of symptoms - anyone had a similar experience and found a diagnosis or effective treatment?

Hello, I've been struggling for years now with massive changes in my body, and I'm really worried for my health, as I...

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...

Categories

Select a category to find topics that interest you.