The Cystinosis Research Network (CRN) is a non-profit dedicated to supporting individuals and families affected by cystinosis.
They are strong advocates for research who simultaneously focus on improving the lives of those currently living with the disease. CRN conducts programs aimed at educating the general public and medical community about the illness, all the while providing encouragement to those who need it most.
On July 13, 2017 the network will host their 8th biennial Family Conference at the Snowbird Ski and Summer Resort in Utah.
The conference will run until the 15th, and each day will be filled with panels, keynote presentations, poster sessions, art activities, meet and greet opportunities, discussions of the latest research developments, and food of course! While parents participate in panels (organized by the age of their child), there will be a multitude of activities available for both the children affected by cystinosis, and their siblings. The itinerary will be updated as the event gets closer, but you can view a tentative schedule here.
This year’s theme is “Soar to new heights”, which seems especially appropriate considering the conference’s venue. The Snowbird Ski Resort is offering discounted lodging for the event, but be sure to make your reservation before June 11th and use the code CRN. If you are interested in speaking or presenting a poster at the conference, check out the CRN website for details on how to register.
The conference is meant to be not only a source of information for people affected by cystinosis, but a way to bring together families who can relate to each other like no one else can. Cystinosis is a rare condition. With approximately 2,000 cases in the entire world, it’s easy to feel isolated and alone in your experiences. The CRN conference provides parents, patients, siblings, and researchers, a place to share their fears, sorrows, and hope.
Plus, we recently reported on two young people who are now engaged to be married after meeting at a CRN event. And while we can’t promise lasting romance… the 2017 Family Conference is definitely not something you want to miss.