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
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Advocates for Love and
Jack & Chandler - United States
Fanconi Anemia & Epilepsy
We are Jack and Chandler from Chicago, IL. Jack was born with Fanconi Anemia (FA), a rare DNA repair deficiency and bone marrow failure genetic condition, and Chandler has been living with Epilepsy since
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