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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 yesterday

Experience with Rare Eye Diseases like Retinitis Pigmentosa?

I recently learned about Retinitis Pigmentosa (RP), which is a rare inherited eye disease that slowly affects the retina and can lead...

Active yesterday

45 years diagnosed Scleroderma

Because outwardly I appear to be fine most people just f fr o not understand how you can look ok but be...

Active 6 days ago

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 7 days ago

Beta Thalassemia

I’ve gone through growth (extra long arms) and bone problems, enlarged spleen and liver, heart problems (like arrhythmias and heart failure from...

Active 7 days ago

Persistence in believing in yourself.

It has been a long ten years. Ten years feeling like they were stolen only to realize that they were actually wrapped...

Active 7 days ago

Common Variable immune deficiency

I was ill from birth. Was not diagnosed until 45 years old. I have damage to my lungs from many infections. Two...

Active 8 days ago

High red cells and tired constantly.

I have morphea and a spinal malformation, constantly sore points underneath each morphea patch, muscle spasms, tiredness and watery vision. I have...

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...

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...

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...

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