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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.
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...

Summer Summer

Fight The Bite: Battling Tick-Borne Illness & MCAS by Mast Cells United

Amber, Rocky Mountain Spotted Fever, Alpha-Gal Allergy, & Mast Cell Activation Syndrome, United States, August 13, 2018

Ticks are most often associated with Lyme disease, but they can also transmit a bunch of other serious health conditions, which often lead to the development of mast cell activation syndrome (MCAS).Su...

MRI Scan MRI Scan

Lillie-Maude's Journey

Lillie-Maude, Chronic recurrent multifocal osteomyelitis, United Kingdom, August 8, 2018

Lillie-Maude is a 10 year old girl from the UK, she was was diagnosed with Chronic recurrent multifocal osteomyelitis which is a one in a million rare disease back in April 2017. She currently has two...

Nicki's NMO Story

Nicki's NMO Story

Nicki, Neuromyelitis optica, United States, August 8, 2018

No one could have prepared me for what was coming around the bend. While 2018 came ringing in with optimism- I was back in school getting my business degree and making moves to start a daycare center ...



Susan, Papillon-Lefèvre syndrome, United States, July 29, 2018

I have become "S"  caregiver, 2018, we live in 2 heat situations, Hot summers & Cold winters. She has been diagnosed with PLS some time ago, today is first time went on Google site & found out...

Oi - Type 3 - Daily Battle Oi - Type 3 - Daily Battle

Daily Battle

Tommy, Osteogenesis imperfecta type 3, United States, July 28, 2018

I was born with osteogenesis Imperfecta. During my birth, I already had broken bones, and previous fractures when I was inside my mom's stomach. During my childhood, I had countless fractures (approx ...

This boy can!

This boy can!

Ryan, Large congenital melanocytic nevus, United Kingdom, July 25, 2018

Hi this is Ryan, he was born with a rare genetic mutation which caused a syndrome  called congenital melanocytic Nevus or CMN for short,  in layman’s terms his body is covered in many many moles, he a...

Sam vs. VWM Sam vs. VWM

Happiness despite battling

Samuel, Leukodystrophy, United States, July 24, 2018

Sam is a 7 year old boy battling a very rare brain disease called Vanishing White Matter disease (see or for more). Vanishing White Matter disease (VWM) is untr...

Punctate Inner Choroidopathy (PIC).

Punctate Inner Choroidopathy (PIC).

Courtney, Punctate inner choroidopathy (PIC), United States, July 21, 2018

At age 30, I suddenly had a severe retinal bleed in my left eye. I was given a thermal laser treatment, whcih caused severe scarring to my central vision, and was told that I ahd Presumed Occualr Hyst...

Syringomyelia sever weakness of legs

Syringomyelia sever weakness of legs

Zeeshan, Syringomyelia, Pakistan, July 20, 2018

in 2009 i surprisingly affect by this disease . when i completly lost my control on my legs, about to fall when someone stand me in standing position. then after MRI i diagnose by doctor who are speci...

Love your lie with FA Love your lie with FA

Do your best every day!

Esteban, Friedreich ataxia, Austria, July 19, 2018

Hi Guys :) How are you? Well, I'm Esteban and live in Austria/Europe. I'm 42 now (how time flies) and for 15 years I'm using a wheelchair because of my FA! I was very sportive. I played basketball, fo...

One of a kind

One of a kind

Ellen, Rpl10, United States, July 18, 2018

My son Evan wasn't diagnosed till he was almost 5 years old with a rare genetic condition called RPL 10. I've come to find out the we are the only family to have this genetic condition. I've watched m...

Our Family Our Family

Family is everything

Karen, Homocystinuria due to cystathionine beta-synthase deficiency, United States, July 18, 2018

My husband, Mark and I have been together for 34 years! We grew up a mile from each other and met in high school.  We got married in 1989 and had our first child, Benjamin in June of 1991.  Benjamin w...


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