Rare diseases heard day 2016 29 february Only 100 days remaining
Rare diseases heard day 2016 29 february Only 100 days remaining
Rare diseases heard day 2016 29 february Only 100 days remaining
2020 events
Tell your story!
Matei's Story
Cristina - Romania
Mitochondrial DNA Depletion Syndrome Type 7 (or IOSCA)
Matei's Story Matei was born on August 5th 2018, being an extremely healthy child.He has had an exciting development period. From the newborn to an active toddler he reached all the milestones that a child
EDS
Lisa - United States
Ehlers-Danlos syndrome, hypermobile type
I wasn't diagnosed with EDS until age 55. I spent my whole life with dislocations, subluxations and chronic pain which I was told was all in my head. I could put my foot over my head with ease, I also
The Worst Day of My Life
Katherine - United States
Mitochondrial disease
Most high school students worry about getting good grades to make their parents happy or making friends in high school. I was not one of those students; towards the end of my junior year of high school,