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.
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-...

21 to 87

21 to 87

Kira, Nuerocardiogenic Syncope, hemiplegic migraines, dysautonomia, undiagnosed connective tissue disease, United States, February 29, 2020

I haven’t been sick my entire life, I was relatively “healthy” until 2018. I suffered from a mini stroke at the age of 21 and my life did a 360°. Instead of battling limbs that needed to be retaught h...

Chronically Molly

Chronically Molly

Molly, Undiagnosed Mast Cell Activation Syndrome, Undiagnosed Ehlers Danlos Syndrome type III, Idiopathic Urticaria, Conversion Disorder, United States, February 29, 2020

My name is Molly, and I'm almost 16 years old. I am from New York State and I am living with multiple chronic and rare illnesses. My journey started when I was about 12 years old. I was constantly in ...

Living with FSHD and working toward a cure

Living with FSHD and working toward a cure

Sharon, FSHD, United States, February 29, 2020

I have a rare disease – FacioScapuloHumeral Muscular Dystrophy. One in every approximately 8000 people have FSHD. I had never heard of this disease until I became sick at the age of 28. Neither had my...

Caitlyn Caitlyn

Our precious angel ♡♡

Nadine, Niemann-Pick disease type A, South Africa, February 29, 2020

Here we sit thinking that an autism diagnosis was the end of the world. Caitlyn was born on the 20th of May 2012. After a very long 23 hours in labor, we got to see our beautiful baby girl weighing 3....

My twisted face My twisted face

Segmental Dystonia

Brad, Dystonia-plus syndrome, United States, February 29, 2020

I have segmental Dystonia. I was a career firefighter/EMT.  It began with rapid eye blinking and involuntary  jaw movements. I was diagnosed with Meige Syndrome (a combination of the two affected area...

Irene's Scar Irene's Scar

This scar is the least of my worries

Irene, Sarcoidosis, Canada, February 29, 2020

I shared this photo on Facebook in early 2017. I was trying to own it. It is the scar I received as a result of the biopsy surgery that confirmed my diagnosis of Sarcoidosis. These days, having a scar...

Declare Rare...I am the face of Rare! Declare Rare...I am the face of Rare!

Life with Ehlers Danlos Syndrome

Alyssa, Ehlers-Danlos syndrome, United States, February 29, 2020

Hi, I am Alyssa and I am 20 years old. I officially received a diagnosis of hEDS when I was 17 years old. I have exhibited symptoms my whole life but doctors could never fit the puzzle pieces together...

Sandy, then and now Sandy, then and now


Dorothy, Paraneoplastic cerebellar degeneration, United States, February 29, 2020

On behalf of my brave sister Sandy, I want to raise awareness of this horribly disabling syndrome, Paraneoplastic Cerebellar Degeneration. There has been very little research done on this syndrome, wh...

A surviving warrior A surviving warrior

A Warriors Story

Nelly, Chronic pneumonia, chronic anemia, Lupus, United States, February 29, 2020

I have known Teresa for just shy of 37 years. During the last 13 years I’ve seen her suffer with chronic pneumonia, a disease for which there is no cure to date. The endless hospital stays and the phy...


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.