With the New York City Marathon less than two weeks to go, I wanted to share why the Big Apple is such a magic location on my family’s journey with a rare disease. Earlier this year, I had an opportunity to speak on the theme of game changers for the rare disease community as part of a young patient advocates panel at the European Conference on Rare Diseases & Orphan Products in Edinburgh. I began by sharing the story of being taken as a child to Mount Sinai Hospital in New York City to be seen by specialists.
Watch a 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.”
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 friend Jen. I run with hope for Gaucher disease (type 1, 2 and 3), for hypoparathyroidism, and for all those still seeking the correct diagnoses. #weruntogether
The complete young patient advocates panel from ECRD 2016 is available from EURORDIS (The European Organisation for Rare Diseases). Visit EURORDIS TV for more videos.