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.
I am a fighter with NF

I am a fighter with NF

Δαμιανή, Neurofibromatosis type 1, Greece, February 26, 2021

My name is Damiani and I am from Greece.I have NF 1.I learned to live with my rare disease and I will try to have a better quality of life. Your support is important for all of us patients with Rare  ...

Mein Leben mit SMA

Mein Leben mit SMA

Michelle, Spinal muscular atrophy type 2, Germany, February 26, 2021

Mein Name ist Michelle, ich bin 24 Jahre alt und habe SMA Typ zwei. Ich arbeite als Betreuungskraft mit Senioren und liebe es sehr! Seit Dezember 2020 bekomme ich Risdiplam und merke langsam kleine Fo...

Ι Know a fighter with NF Ι Know a fighter with NF

Life with NF-Greece

Sotiropoulou, Neurofibromatosis type 1, Greece, February 26, 2021

My name is Lambrini .I live in Greece.I have a Neurofibromatosis type 1.It is not easy to be a patient with Neurofibromatosis.All patients need a better quallity of life.Everybody must learn about NF ...

My life with iih My life with iih

My iih journey to hell and back

Lynne, Idiopathic intracranial hypertension, United Kingdom, February 26, 2021

My name is Lynne I am 56 about seven years ago I started to feel ill. Yes I was overweight but quite healthy. I started to fall over had vision loss. And ringing in my ears and severe headaches. After...

One In a Million

One In a Million

Amy, Familial cold autoinflammatory syndrome type 2, United States, February 26, 2021

"One in a million" - that's the phrase I heard my doctor describe my disease to a nurse as I was coming out of anesthesia. I was recently having a colonoscopy to find out why I was bleeding so much in...

Finally living Finally living

The Road to Answers

Amanda, Agammaglobulinemia, United States, February 26, 2021

As a child, I was always sick.  Whether it was an ear infection, strep throat, and a sinus infection.  When I was 16, I was diagnosed with Hodgkin's and Non-Hodgkin's Lymphoma.  After I completed chem...

Liquid gold Liquid gold

Zebra stuck in a horses world

Savannah, CVID, United States, February 26, 2021

Hello, my name is Savannah.  My journey started when I was very young.  As a young child I was sick.... well, a lot! It had gotten to the point to where people would tell me I was just making it up fo...

Rare Disease Day 2021 photo Rare Disease Day 2021 photo

Learning to Advocate as a Patient

Sunny, Septo-Optic Dysplasia, United States, February 26, 2021

I was born with a congenital rare disease called “Septo-Optic Dysplasia”, which caused further complications with diagnostic names that are just as long and complicated. Basically, my pituitary gland ...

Giorgos from Gastouni, Greece Giorgos from Gastouni, Greece

Living with Jacobsen syndrome: Giorgos from Greece

Giorgos, Jacobsen syndrome, Greece, February 26, 2021

Hello everyone, I'm Giorgos - that's "George" in Greek - and I'm 19 years old. I was diagnosed in 2009 with a rare genetic disorder: Jacobsen syndrome with 11q24.1-qter deletion, a disorder so rare th...

Dream Team Dream Team

Staying positive and accepting myself for who I am.

Wei, Spinal Muscular Atrophy type III, Singapore, February 26, 2021

Hi there I am Wei, and I have spinal muscular atrophy type III.  I was quite young when I found out about my condition and honestly did not put too much thought into it. I only wanted to lead a normal...

Levis Journey

Levis Journey

Amanda, PHACE syndrome, Australia, February 25, 2021

Levi was born with the most perfect little face and smoothest, softest skin, after a few hours we noticed what appeared to be large bruising. Checked over by the paediatric doctor at the hosptial, it ...

I'm A Silent Warrior

I'm A Silent Warrior

Kaila, Scleroderma, United States, February 25, 2021

If 2020 was not already the craziest year to ever happen, I was also diagnosed with Scleroderma (Diffuse Systemic) on April 16th of that year at 27 years old. Prior to this diagnosis I had no idea thi...

Saige’s story

Saige’s story

Robin, Nonketotic Hyperglycinemia (NKH), United States, February 25, 2021

My daughter, Saige Elizabeth, has a rare condition called Nonketotic Hyperglycinemia (NKH). This is her story.SAIGE’S STORYSaige was born July 30, 2010, a beautiful, calm, mellow, and healthy baby gir...

Deanna by: Gady Mayen Deanna by: Gady Mayen

It's More Than Skin: Living with EB

Deanna, Dystrophic Epidermolysis Bullosa, Canada, February 25, 2021

It’s More Than Skin, no matter how unique our outer appearance may be, it is our innermost self that shines brightest and defines our legacy. My name is Deanna, I am an emerging contemporary artist, f...

The headache that changed my life

The headache that changed my life

Blake, Pituitary apoplexy, Hypopituitarism, Ireland, February 25, 2021

I guess I'll start from the beginning for me. I went to bed one weekend night but was woken up abruptly shortly after feeling a bad pain in my head. I'm not someone who suffers from headaches that muc...

A young person's journey through IIH

A young person's journey through IIH

Hannah, Idiopathic intracranial hypertension, United Kingdom, February 25, 2021

I was diagnosed a week after my 14th Birthday. I had been suffering with terrible  headaches 24/7 for a year after being unable to keep up attendance at school. I LOVED school. In the lead up to diagn...

Kassie The Zebra Kassie The Zebra

35 Long Years

Kassie, Ehlers Danlos Syndrome, United States, February 25, 2021

My name is Kassie Benoit and I am 57 years old.  I was born and raised in New York, but moved to Las Vegas with my parents when I was 15.  I always knew I was “different” growing up, but never knew wh...



Chris, Chronic myeloid leukemia, Australia, February 25, 2021

In July 2020 I was admitted to hospital in terrible pain coming from my back! After CT scans it showed I had 3 bulging discs.Obviously routine blood tests were taken and only 48hrs after I was admitte...

Sweet girl Natalia Sweet girl Natalia

CDG Georgia - From Diagnosis to Destiny

Tata, PMM2-CDG, Georgia, February 25, 2021

Little girl Natalia Franchuk  - First PMM2-CDG from the country of GeorgiaWhen Natalia was born 10 years ago everything seemed fine but when she was 40 days old he became sick and no one could find th...

Our perfect tiny boy! Our perfect tiny boy!


Maria, Nicolaides-Baraitser syndrome, Australia, February 25, 2021

Our beautiful little boy Oskar was with NCBRS just over a year ago, I first uploaded his story last year and here we are again raising awareness for Nicolaides Baraitser Syndrome. When Oskar received ...


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