Filters

Rare Disease Day Changed My Life With APS-Type1

I was diagnosed with Autoimmune Polyendocrine Syndrome-Type 1 over fifty years ago and had not met anyone with this condition until two years ago. The… Continue reading Rare Disease Day Changed My Life With APS-Type1

Read full story

Hurry up!

I have limb girdle muscular dystrophy of which subtype or damage cell I’m still searching for. Thankfully, my symptoms – loss of balance, walking becoming… Continue reading Hurry up!

Read full story

Team Stacey Fight Club

Hello! I’m a Pseudomyxoma Peritonei Appendix Cancer Survivor. You can find my testimony along with pictures at: www.teamstaceyfightclub.com

Read full story

My live with retinitis pigmentosa and a retina implant

My name is Dorothea, I am 47 years old and live in a small village in germany. When I was about 3 years old, my… Continue reading My live with retinitis pigmentosa and a retina implant

Read full story

A long road to porphyria diagnosis

Like many people suffering from porphyria, I have been dealing with the disease longer than I knew. My diagnosis was delayed and convoluted due to… Continue reading A long road to porphyria diagnosis

Read full story

My son’s story

My step grandson and his brother came to live with us when he was 3 1/2 years old. We had know since his birth that… Continue reading My son’s story

Read full story

My son’s story

My step grandson and his brother came to live with us when he was 3 1/2 years old. We had know since his birth that… Continue reading My son’s story

Read full story

DRESS Syndrome: Preparing to Die.

There’s a humbling chill in learning there isn’t anything doctors can do to prolong the great inevitable. To date, it’s the hardest thing I’ve ever… Continue reading DRESS Syndrome: Preparing to Die.

Read full story

Dercums disease

I go under the name Suzi More…my site is www.mysuzimore.com where almost 200 tracks of songs I have produced are located. Almost all of the… Continue reading Dercums disease

Read full story
What's your story?

Be part of Rare Disease Day by sharing your story with others and sending a message of solidarity!

Share your story

Share your colours

Join the community. Help us build awareness. Share your photos, videos and experiences!