1 in 100,000 can feel like such a lonely number, especially when you go your whole life without ever meeting anyone else with the same condition as you. That all changed with the group ‘Living with Holt-Oram Syndrome’ on Facebook in 2012, which connected hundreds of people who had been diagnosed with this syndrome. Who were searching for a community where they can learn more about themselves and share in each other’s experiences. A family was born on that social media platform, one that will host its first ‘family reunion’ on February 29, 2020 in recognition of Rare Disease Day.
What better way is there to express you Independence, Pride, and Creativity than to create pieces of art using the hands which have set you apart from the world, while meeting and enjoying the company of people who have walked in the shoes that you have.