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

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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...

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...

Active today

How does someone get a diagnosis without understanding what's going on?

I have been on a diagnosis journey for two to three years. My primary symptoms are syncope, joint and muscle pain, and...

Active 4 days ago

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...

Active 4 days ago

Getting doctors to understand

I spent 10 years of my life in excruciating pain. The last two years of my life I considered not being here...

Active 5 days ago

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...

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