With the New York City Marathon less than two weeks to go, IÂ wanted to share why the Big AppleÂ is such a magic location on my family’s journey with a rare disease.Â Earlier this year, I had an opportunity to speakÂ on the theme ofÂ game changers for the rare disease communityÂ as part ofÂ a young patient advocates panel at the European Conference on Rare Diseases & Orphan ProductsÂ in Edinburgh.Â I began by sharing the story of being takenÂ as a childÂ to Mount Sinai Hospital in New York City to be seen by specialists.
Watch aÂ short clip:
“This trip was the first time that they [my parents] had any connection to news about the Gaucher community…The information meant that they were able to leave with hope and a feeling of being less alone.â€
New York won’t be my first marathon but it means a lot to me to have the chance to run in this city, as part of this team, and for my community partner and friendÂ Jen. I run with hope for Gaucher disease (type 1, 2 and 3), for hypoparathyroidism, and for all those still seeking the correct diagnoses.Â #weruntogether
The complete young patient advocates panel from ECRD 2016 is available from EURORDIS (The European Organisation for Rare Diseases).Â Visit EURORDIS TV for more videos.