One Rare Experience

One Rare Experience is a free program for young adults with rare conditions working towards fulfilling One Rare’s mission to improve experiences for this community through education, mentoring and peer support. Our inaugural event was scheduled for August 2020. As we set out to plan this first event, the COVID pandemic required us to quickly shift to a virtual format. Imagining this event being virtual was challenging at first, but our team worked hard and pivoted towards an online format and our efforts were rewarded and appreciated through the great feedback we received from our participants. One Rare Experience will be held annually, with a goal to have the event offered in-person and virtually going forward. Programming will focus on lifestyle and health, expression, art, and employment as well as free time to network, build social connections, and form friendships.