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

Art to cope with your rare disease

Do you use art or creative outlets to cope with your rare disease? If so, please share your favorite projects with us...

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...

What are some of the biggest accessibility challenges you face in your daily life due to your rare disease?

Accessibility is a crucial part of living with a rare disease, and your experiences can be varied yet also relatable. Consider sharing...

I wish others knew that...

What is one thing you wish more people knew about living with a rare disease?...

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...

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