Discover their stories

Nine inspiring men & women share their stories to provide a glimpse into their life with a rare chronic illness. We thank them for their message of hope and solidarity to the community.

Jessica, 37

Ehlers-Danlos Syndrome

“Since I was born, I have had asthma and lots of allergies. At 6 years old, I started having back and shoulder pain. But as you probably guessed, the doctors didn’t take me seriously. Every time I had to lift something heavy, I would dislocate my shoulder...”

Hannah, 21


“My name is Hannah and I am 21 years old. Since I was young, I have had back pain. Despite my symptoms no doctor thought it was necessary to do an x-ray. It took 11 years for me to receive a diagnosis...”

Nataliia & her 1-year-old son

Angelman Syndrome

“Daniel was born in May 2019. The pregnancy was perfect. I was the happiest woman in the world! Yes, during the first months Daniel had feeding problems, a small blockage in the throat, a little flat head, strabismus, reflux issues...”

Noémie, 43

Amyotrophic lateral sclerosis (ALS)

“I am Noémie, a 43-year-old mom of 4. I have been living with ALS for a few years now. ALS stands for ``Amyotrophic Lateral Sclerosis``, an incurable, neuromuscular disease...”

Jean-Paul, 55

Arnold-Chiari malformation type I

“I used to do a lot of sports. I played football and was even referee, and trainer for a few years. On top of that I used to run, cycle, swim and go to the gym. I also participated in 10K races, semi-marathons, duathlons, and triathlons...

Maria, 47

Madelung disease & Strümpell-Lorrain disease

``I would even say that my disease is my strength: every little thing that I manage to do during the day is an achievement and I tell myself: “See, you can still do it...”

Jean-Claude, 53

MoyaMoya disease

“My name is Jean-Claude, I am 53 years old, married. And I have two daughters with my spouse Fiona. Ten years ago, one morning end of March my wife insisted that I had a stroke during the night. She thought the two halves of my face were desynchronised...

Elisabeth & her daughter Amy

SCN2A related disorder

Amy’s birth was normal - everything went well. But what started afterwards was completely unexpected and the hardest thing. Amy was unable to drink after birth. I immediately felt that something was wrong...

Hannah, 42


“It sounds awkward, but I am almost happy it happened. I was very (!) hard working before, neglected friends and family. I guess I needed this fist in the face to set my priorities straight...``

Samia & her brother Mehdi


``As a child, Mehdi was always a creative and imaginative soul. He enjoyed dressing up and disguising himself to scare me. His favorite time of the year was Halloween. His favorite artist was Michael Jackson. At 3 years old, he could do the moonwalk...``

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