Tell your story!

Share your photos, videos and your experiences!

Be part of Rare Disease Day by sharing your story with others and sending a message of solidarity! You can write about your story and also submit photos or a video testimonial.
New Wheelchair User New Wheelchair User


Lisa, Ehlers-Danlos syndrome, hypermobile type, United States, June 7, 2020

I wasn't diagnosed with EDS until age 55. I spent my whole life with dislocations, subluxations and chronic pain which I was told was all in my head. I could put my foot over my head with ease, I also...

Mito Strong Mito Strong

The Worst Day of My Life

Katherine, Mitochondrial disease, United States, June 5, 2020

Most high school students worry about getting good grades to make their parents happy or making friends in high school. I was not one of those students; towards the end of my junior year of high schoo...

Paul's story CTD

Paul's story CTD

Gillian, Limbic encephalitis with LGI1 antibodies, Israel, May 20, 2020

Sadly, since writing Paul's story on Limbic encephalitis anti-LGI1 and neuromyotonia (UMN), we are grieving because he passed away in mid-April this year. I would therefore like to add the following:T...

Rare Disease Day Rare Disease Day

Battle Cry

Nicole, Systemic mastocytosis, Italy, May 13, 2020

April 23th, 2017. It all started like this, or rather, it made everything worse like this ... Since I was a child I have suffered from muscle and bone pain, often also from gastrointestinal problems, ...

Avie and one of her Strensiq treatments for HPP Avie and one of her Strensiq treatments for HPP

Meet Avalon, Young Founder of The Avalon Foundation with HPP

Erin, Hypophosphatasia, United States, May 7, 2020

Avalon (Avie) has a rare genetic disease, Hypophosphatasia (HPP), that is characterized by the abnormal development of bones and teeth. Avie, who is all too familiar with HPP, explains it in layman's ...

The Cold

The Cold

Madison, Cold Urticaria, United States, May 6, 2020

Hi I'm Maddie I'm 15 and 2 years ago I was diagnosed with Cold Urticaria or how I like to pronouce it UDICARDIA its much easier.One summer my whole life changed, I was out hiking in one of that favori...

Surviving A Pandemic Is Like Surviving A Stroke Surviving A Pandemic Is Like Surviving A Stroke

Surviving A Pandemic Is Like Surviving A Stroke

Maggie, Cavernous lymphangioma, United States, April 17, 2020

Never Give Up Never Give Up

Life with Episodic Ataxia type2

Darcy, Episodic ataxia type 2, United States, March 29, 2020

My name is Darcy & this is my story "Life with Ataxia" my journey to diagnosis. I was born July 26th 1992 & I was considered a developmentally delay child. I was late to walk, talk & use m...

The color of love The color of love

From fear to faith....

Shari Mcfarkand, Amyliodosis Al, United States, March 11, 2020

My husband was this amazing athlete, who turned his love for track into coaching, and working with troubled youth.  Always healthy, one day he was fine and the next he just wasn't.  We moved from cold...

Crystal Crystal

Life with Trigeminal Neuralgia

Crystal, Trigeminal neuralgia, United States, March 5, 2020

My name is Crystal. I’m 23 years old, and was diagnosed with Trigeminal Neuralgia, in May of 2017. That was 4 days after my 21st birthday. I woke up and the right side of my face was numb. Immediately...

Mi hermoso guerrero Mi hermoso guerrero

Mi gran guerrero

Fabi, Tetrasomy 15q26, United States, March 5, 2020

El es mi hijo javier tiene 3 años y con un síndrome que no es tan común quisiera en algún momento encontrar una familia con el cual poder aprender más sobre este síndrome y así poder ayudar más a mi h...

Gastro warrior

Gastro warrior

Stacey, Gastroschisis, United Kingdom, March 3, 2020

My son was diagnosed with gastroschisis at 17 weeks and 3 days I had to be induced at 33 weeks my son came at 33+1 the next day. My son had two surgeries when he was born in a span of a week he's now ...

Dr. Dez Dr. Dez

My New Normal

Desiree, AL Amyloidosis, United States, March 3, 2020

Bombshell!!!!! I was in for a shock of my life. I did not see this coming by a long shot. Something that I had no control over. A life changing moment. Sitting in the doctor’s office, waiting for the ...



Agnes, PNH, United States, March 3, 2020

I was diagnosed with severe aplastic anemia in 2004 .   Prior to that I was feeling tired all the time and couldn't keep my eyes opened.  I thought I was iron deprived but that wasn't the case.   Than...

Rare Disease Day Rare Disease Day

Ainsley's Disease

Mary, Peroxisomal disease (zellweger syndrome), United States, March 2, 2020

I am the great, great aunt of a beautiful girl named Ainsley, who has Zellweger syndrome, a peroxisomal disease. I hate that there is no cure for her disease. She has so many health issues and she kee...

The Start The Start

My Story of Survival

Victoria, Reflex Sympathetic Dystrophy, United States, March 1, 2020

In 2008 I was beginning my Junior year of high school, when on November 1st, while moving my great grandmother into a new apartment my world as I knew it crumbled around me. I dropped a marble table o...

The invisible group

The invisible group

Diane, Relapsing Polychondritis, United States, March 1, 2020

Each year I "celebrate" Rare Disease Day which was February 29th.  Celebrate is a weird word to describe it, but it a day that I remember that I am not alone in this fight with a rare disease.  I have...

Infusion day on my birthday Infusion day on my birthday

GPA wegeners warrior

Maria, GPA, United States, March 1, 2020

After many months with flu like symptoms, antibiotic after antibiotic I was diagnosed with vasculitis more specifically Graulomatosis with Polyangiitis Aka wegeners disease. A 19 year old girl put her...

Lack of Government Assistance for an extremely rare condition

Lack of Government Assistance for an extremely rare condition

Bray, SLC1A4, Australia, March 1, 2020

I have a 6 year old grandson with a condition known as SLC1A4  of which there are approximately 20 known cases in the world.Dean who is epilectic with intelligence issues cannot walk,crawl,sit up,talk...

"Its all in your head"

"Its all in your head"

Mara, Psychogenic movement disorders, Hungary, March 1, 2020

"Its all in your head." "Its only psychogenic." "Get over it, its just in your head."Just some phrases I have to deal with nearly every day. I'm 21 and I suffer from Psychogenic-Non-epileptic-seizure-...


Share your story

(To find the english name and more information about your disease, click here). Start typing the English name of your disease. Please choose from the suggestions that appear. If your disease is undiagnosed please write ‘undiagnosed’, or if you would like to list multiple diseases, please type in a list separated by commas.