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.
Dani, age 6 Dani, age 6

Beautifully and Wonderfully Made

Brenda, SYNGAP1, United States, January 16, 2019

Here's our rare disease story...many of you have heard it, some have not.Danika came into this world like any other. Labor was quick, but the doctors did not bring her to me right away and when I look...

Living with PIC

Living with PIC

Lauren, Punctate inner choroidopathy with choroidal neovascularization, United States, January 12, 2019

Back in 2006 when I was 34 I was noticing an area of warped vision in my right eye. After 6 months it was finally diagnosed as PIC with CNV.  After 4 treatments of Avastin, a colorectal cancer drug, i...

Der "Bewusstseins" -Kampf der Mutter mit derselben Krankheit wie ihre Kinder

Der "Bewusstseins" -Kampf der Mutter mit derselben Krankheit wie ihre Kinder

Birsel, FMF (Familial Mediterranean Fever),AA-Amyloidose,u.a., Germany, January 12, 2019

English:Mrs.Birsel Ağca,who lives in Germany,has FMF (Familial Mediterranean Fever) disease for 20 years,and has dedicated herself to create awareness related to FMF disease.She has two kids,they also...

Me in Myanmar 2018 Me in Myanmar 2018

Growing Up With Narcolepsy

Kayla, Narcolepsy-cataplexy syndrome, United States, January 11, 2019

The breeze blew the curtains in my dark room. My eyes were glued to the glowing stick on stars arranged on the ceiling to look like constellations. I felt his finger stroke the side of my face and hot...

Me at 17 : A year and a half into treatment Me at 17 : A year and a half into treatment

Me:Just not quite yet

Owen, Kallmann syndrome, United Kingdom, January 5, 2019

At 16 my life changed.I was diagnosed with a rare condition. The condition is called Kallmann syndrome and it's main symptom is not going through puberty. To be 16 and not go through puberty puts you ...

Lori Lori

What about M.E.? Living with a little known and widely misunderstood neurological disease

Lori, Undiagnosed, United States, January 5, 2019

What About M.E.?Living with a Little Known and Widely Misunderstood Neurological DiseaseMyalgic Encephalomyelitis Chronic Fatigue Syndrome, or ME CFS for short, is the disabling disease that I’ve been...

Brianna Brianna

Over coming

Brianna, Myositis, United States, January 4, 2019

For anyone who is struggling with their rare disease. At the age of 16 I was diagnosed  with Myositis, an autoimmune disorder that attacks my muscles. This was very difficult for me at the time. I cou...

The strength is within us - Believe in your inner power and you will find the way....

The strength is within us - Believe in your inner power and you will find the way....

Katerina, Pituitary adenoma, Greece, December 29, 2018

My name is Katerina Ronga. I am a 38 year old woman, mother of an 8 year old boy and Senior Quality Manager at the largest telco in Greece (OTE Group of companies / DT Group).I was recentrly diagnosed...

Brad Brad

Twenty-One Letters... All One Word

Brad, CVID, United States, December 28, 2018

Twenty-one letters… all one word“I don’t want to alarm you, but are you bleeding from anywhere?” Those were the words that came across the phone that would change my life forever. Guardedly, I respond...

Central Pain Syndrome: Awareness Brings Hope for the Future Central Pain Syndrome: Awareness Brings Hope for the Future

Central Pain Syndrome: Awareness Brings Hope for the Future

Patti, Central Pain Syndrome, Cavernous Malformations, United States, December 17, 2018

Since 2010 I live with a rare, excruciatingly painful and poorly understood neurological pain condition known as central pain syndrome, CPS.  CPS is caused from damage to the central nervous system, a...

Rebecca Rebecca

The invisible disease

Rebecca, Primary ciliary dyskinesia, Australia, December 15, 2018

At 24 weeks pregnant we discovered our baby boy had Situs Inversus Totalis, meaning he had reverse positioning of his heart and some organs.  Apparently you can go all through out your life not knowin...

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...


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.