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.
Olivia's story

Olivia's story

Olivia, Ataxia-telangiectasia, Canada, December 6, 2018

Olivia is 5 years old and was just recently diagnosed with Ataxia Telengieactia (AT). This disease effects her mobility, immune system, speech and make her at greater risk for cancer. There is current...


Living with Parry-Romberg syndorme

Isabella, Parry-Romberg syndrome, New Zealand, November 24, 2018

Parry–Romberg syndrome is a rare disease characterized by progressive shrinkage and degeneration of the tissues beneath the skin, usually on only one side of the face but occasionally extending to oth...

Khloe Khloe

Living with Mowat-Wilson syndrome

Kori, Mowat-Wilson syndrome, Canada, November 23, 2018

When my daughter was diagnosed in March of 2018, I had no idea what Mowat-Wilson syndrome was at all, but all of Khloe's doctors gave us a lot of good websites to go and read up about it. Life with MW...

Mon handicap est en plus invisible ! Mon handicap est en plus invisible !

HYPOpara mais HYPERcombative

Ko, Hypoparathyroidism, France, November 18, 2018

J'ai 50 ans et je vie avec une maladie hormonale invisible qui se manifeste par des crises de tétanie et divers troubles neuromusculaires, physiques, cognitifs et émotionnels. En 2004 je me suis révei...

narcoleptique oui et alors narcoleptique oui et alors

Je suis Narcoleptique rien de bien passionnant et pourtant....

CARL, Narcolepsy-cataplexy, Belgium, November 18, 2018

Je suis atteint d'une Narcolepsie de type 1 avec calaplexie et paralysie du sommeil...Depuis tout petit je suis différent des autres mais malgré tout je suis le papa de trois grand garçons que j'adore...

Ella Portrait Ella Portrait

Living with Cutis Marmorata Telangiectatica Congenita

Barbara, Cutis Marmorata Telangiectatica Congenita, United States, November 12, 2018

Six year old Ella, the daughter of Britney, represents the many children in southern Illinois who receive services through TLC.Ella was born with an extremely rare syndrome called "m-cm" or "m-cap". E...

La Partita Rara La Partita Rara


Matteo, EEC syndrome, Italy, October 25, 2018

I love soccer and I owe it so much. I am affected by a rare disease and, unfortunately I have never had the possibility to see my first child to be born, due to the same syndrome I have.  In order to ...

Do Not Give Up Do Not Give Up

Nothing is Impossible

Matina, Mutation of 2 Genes: CAV 3 - RYR 1 ), Greece, October 21, 2018

My name is Matina, I am 46 years old, I am married , I am a mother of three children, grandmother of 2 grandchildren and I also have a dog. I suffer from a rare disease. At the age of 40, my health pr...

The Last Remaining Light

The Last Remaining Light

Martin, Addison disease, Sweden, October 19, 2018

Please watch this video (linked below) to hear about my life and journey living with Addison disease: Find others with Addison's disease on RareCo...

My ADEM story

My ADEM story

Hannah, Acute disseminated encephalomyelitis, Australia, October 19, 2018

I became very sick early July 2016 with severe headaches, vomiting and slowly losing mobility. After a few back and forth trips to doctors & emergency rooms I was finally admitted into hospital - ...

Smith-Kingsmore Syndrome

Smith-Kingsmore Syndrome

Mike, Smith-Kingsmore syndrome, United States, October 18, 2018

I have a soon-to-be 16-year old son who finally got a genetic diagnosis this year: Smith-Kingsmore syndrome! There aren't very many people who have had this diagnosis as of yet, but we are certain as ...

It took a long time to find out

It took a long time to find out

Ida, FOSMN syndrome, Norway, October 16, 2018

In 2002 my right cheek went numb. I told my sister, who is a nurse, and she immediately had my head scanned to check whether I had a brain tumour developing. Fortunately, I had not. Gradually the whol...

Allan Rowley - Me, My Diagnosis & My Family Allan Rowley - Me, My Diagnosis & My Family

Living with Spinocerebellar ataxia type 2

Allan, Spinocerebellar ataxia type 2, Canada, October 3, 2018

Hi, my name is Allan Rowley. Thanks for taking the time to read my story. I’ve started a GoFundMe campaign because I suffer from a condition with no known cure. It’s a disorder called Spinocerebellar ...

Beautiful girl Beautiful girl

Our Rare Cutie

Sarah Roy, 1q21.1 microdeletion syndrome, United States, October 1, 2018

Cecilia was born with a multitude of health issues including hypotonia, suck/swallow issues, severe reflux and other complicated GI issues. She had seizures like episodes and spent all day arching in ...

Invisible illness

Invisible illness

Kat, Juvenile Spondyloarthropathy Arthritis, Amplified Musculoskeletal Pain Syndrome, United States, September 30, 2018

Hi! I'm Kat and I'm in my first year of high school at 14 years old. At three years old, my life kind of broke and I never knew because, well I was three. At this time I was diagnosed with Spondyloart...

Interstitial Cystitis CURE

Interstitial Cystitis CURE

Carol, Interstitial cystitis, United States, September 27, 2018

I was diagnosed with interstitial cystitis and suffered for years. Finally found a urologist that said he could do surgery to stretch and then stitch  open the bladder neck to correct this problem. It...

Sarcoidosis Sarcoidosis


Sally, Sarcoidosis, United Kingdom, September 26, 2018

I’ve been diagnosed with sarcoidosis and my body is attacking itself, I feel so unwell and mostly stuck in bed . There doesn’t seem to be anyone who can help me my health is deteriorating rapidly.

Everyday Torture

Everyday Torture

Isabel, Misophonia, United States, September 26, 2018

I had a perfectly normal childhood up until I was nine. One day I noticed as I sat down to eat with my family all these different sounds that they were making. Of course I had heard the sounds before,...

Sugar smiles Sugar smiles

Charlie’s story

Anna, Complex hereditary spastic paraplegia, United Kingdom, September 24, 2018

As a small child there was always something different about Charlie, he never made friends - was constantly being bullied. I was back and forth to the doctors telling them I thought he might be autist...

Living with IA in Zimbabwe

Living with IA in Zimbabwe

Tino, Imperforate Anus, Zimbabwe, September 5, 2018

“Growing up in Sub-Saharan Africa, Zimbabwe, family and society had convinced me to believe that I was cursed by ancestral gods, in my mother’s womb. I learnt to accept that I was a black sheep, an ug...


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.