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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.
Anna from Warsaw Anna from Warsaw

Breaking down barriers and stereotypes, living with Addison's disease

Anna, Autoimmune hypoparathyroidism-chronic candidiasis-Addison disease syndrome, Poland, March 1, 2021

I have been suffering from rare autoimmune diseases related to the adrenal cortex.Since i was a child,and I have had to overcome many barriers and stereotypes about this disease thoughout my life.Ther...

Getting bigger! Getting bigger!

Overcoming everything

Asher, Short bowel syndrome, United Kingdom, March 1, 2021

Hi, I'm Asher. I'm now 7 3/4 months old!When I was 6 weeks Doctors told my parents I was about to die, and the should say their final goodbyes. Twice.My bowel twisted - I developed a volvulus - and ev...

My family My family

Xander's Journey finding a cure

Yohanna, SLC6A1, United States, March 1, 2021

My name is Yohanna. I have a 3-year-old name, Xander. He was born healthy, and everything was great until he reached six months. I noticed he was not getting his milestones, and of course, I was conce...

Spending time in the ER Spending time in the ER

Almost 18 and still going

Breanna, Chiari malformation type, United States, February 28, 2021

Chiari malformation type , idiopathic intracranial hypertension, Eds, gastroparesis,All my life I've had headaches and pain in my joints. But when I was 12 I had a bad fall that caused blindness and h...

Bones Phighter Bones Phighter

PH Warrior Phighter

Jessica, Pulmonary hypertension due to lung disease and/or hypoxia, United States, February 28, 2021

Baby Jessica was born October 26, 1983 at Denver General Hospital in Denver, Colorado. Jessica was born 3 months premature weighing one pound,  7 ounces. The Rocky Mountain News crowned her the “Mirac...

Me and my little bonsai Me and my little bonsai

We can help to help

Marielou, Cystic fibrosis, Italy, February 28, 2021

Trovo molto tenero che proprio il 29 febbraio, il giorno più raro dell’anno, sia stato scelto per celebrare il #RareDiseaseDay, la GIORNATA MONDIALE delle MALATTIE RARE.Come sapete ho sempre condiviso...

My wedding 2020 My wedding 2020

Living with hsp

Jessica, Hereditary spastic paraparesis, United States, February 28, 2021

At about 3 years of age I was diagnosed with cerebral palsy but around 10 years of age I started experiencing more symptoms like seizures and worsen gait. When I entered high school I was diagnosed wi...

Silvio Silvio

Friends for Silvio, Raising Awareness of ALS

Friends of Silvio, Amyotrophic lateral sclerosis (ALS), Brazil, February 28, 2021

We are friends of Silvio, a wonderful musician and professional who is recently diagnosed with ALS. We are looking to raise awareness and find treatments for ALS by sharing our friend Silvio’s story h...

It is hard to live with rare disease, but it is worth it!!

It is hard to live with rare disease, but it is worth it!!

Luke, Ehlers-Danlos syndrome hypermobility type, Czech Republic, February 28, 2021

Mrkh and me Mrkh and me

MRKH and Me

Jennifer, Mayer-Rokitansky-Küster-Hauser syndrome type 1, United States, February 28, 2021

Picture me at 17. A delco native doing my best to enjoy my teenage life. I focused on the now a lot. For years at this point I had been shuttled to different pediatricians and doctors trying to figure...

Whistling Face Syndrome Whistling Face Syndrome

Whistling Face Syndrome

Zoraida, Whistling face syndrome, Puerto Rico, February 28, 2021

Hello everyone! I'm puertorican.. I born in 1984 with Whistling Face Syndrome, or Freeman and Sheldon syndrome. I'm the only one in my family with the syndrome.I have a BBA in Marketing and MBA in Hum...

Leo Leo

A cruel end

Leo, Multiple system atrophy, cerebellar type, United States, February 28, 2021

What started as vague symptoms that Drs attributed to strokes slowly progressed to a debilitating disease that stole the rock of our family.  Multiple system atrophy (MSA) is a progressive neurodegen...

Eve Eve

Getting there

Eve, Behçet disease, United Kingdom, February 28, 2021

After a long chest infection from November to December 2019 I started developing painful oral ulcers which also spread down my throat, I lost count at 50 in one go. I was so puffy and swollen, I could...

Mia Mia

Mia

Maja, 1p36 deletion syndrome, Croatia, February 28, 2021

My daughter Mia was born with congenital cytomegalovirus infection and from birt we new she will face a lot of obstacles in her life. We were told she will never walk, talk etc. But she was little war...

CANVAS syndrome

CANVAS syndrome

Sandra, CANVAS, Netherlands, February 28, 2021

Canvas syndrome diagnosed in 2020. Symptons started 16 years ago with chronic coughing. Dizzyness and balance issues getting worse. Now 49 years old with 9 year old son. Prognosed: slowly getting wors...

Nellie age 9 Undiagnosed Nellie age 9 Undiagnosed

An Undiagnosed Journey

Emma, Undiagnosed, United Kingdom, February 28, 2021

Hi, I’m Emma. I am a mum of five. William is fifteen, Alfie is twelve, George is six, Arthur is three, and my SWAN Nellie is nine.  Having a child who is undiagnosed is a lonely situation to be in - ...

Kleefstra Syndrome - together for a cure Kleefstra Syndrome - together for a cure

Kleefstra Sydrome - together for a cure

Sebastian, Kleefstra syndrome, Germany, February 28, 2021

Our two-year-old daughter has the Kleefstra Syndrome.This rare disease of genetic origin affects the neurological development and has currently no cure or treatment. Our dream, like that of many paren...

Raising awareness in memory of our Sister

Raising awareness in memory of our Sister

Sarah, Congenital diaphragmatic hernia, United Kingdom, February 28, 2021

We like to raise awareness in memory of our big sister Chloe-Elise who was born with CDH. Chloe was born with a left sided hernia and sadly grew her wings 12 days later, every year we raise money and ...

我就是我 我就是我

認識與接受它,更想积极傳达給更多人了解

May, Primary biliary cholangitis, Malaysia, February 28, 2021

2017年那年刚好40岁,身体每况下降,白天终是昏昏欲睡。刚开始还以为是睡眠不足够,身体免疫系统出问题,皮肤敏感日夜严重,眼睛皮下生油泡去看皮肤医生,医生建议我做一个全身检查,毕竟我也多年未做全身体检查了。结果报告出炉肝脏亮起红灯,医生告诉我一个未成听过の(慢性)罕见疾病名称。上网搜索查询这到底是什么疾病?不时问自己一向来非常注意飮食和身体健康の我,为何会得这罕见疾病?为什么是我?这疾病在东南亜是...

Rowan Rowan

Rowans journey with Tay-Sachs disease

Deborah, Tay-Sachs disease, B variant, infantile form, United Kingdom, February 28, 2021

This is my son Rowan he was diagnosed with Tay-Sachs disease in April 2020, when he was 11 months old. He started to manage to sit unaided, then all of a sudden he couldn't. We also noticed he wouldn'...

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