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

Learning to cope w/all my medical issues

I'm new on here, hoping to have some people to chat with. I have 4pups that keep me company everyday. Hugs +snuggling...

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...

Active today

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...

Do you consider yourself to have an invisible illness?

What aspects of your rare disease are invisible to others? Share in the comments below....

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...

Animal Companions

Do you have a pet that has helped you cope with life with a rare disease? Tell us about them and/or share...

Traveling With a Rare Disease

Tell us about your travel experiences? How do you prepare for a long or short trip? Do you have any tips to...

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...

What helps you avoid burnout or chronic illness fatigue?

Personal Strategies – What routines, habits, or lifestyle changes help you avoid burnout or fatigue? (e.g., sleep, nutrition, mindfulness)...

Have you ever seen your rare disease represented in the media?

How did it make you feel? Did you feel it was an accurate depiction? Tell us more about what you would like...

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