Dyskeratosis Congenita Outreach, Inc. is a grassroots, volunteer-operated foundation serving patients and families affected by DC around the world. DCO emerged in 2008 following a DC Clinical Research Workshop at the National Institutes of Health in Bethesda, Md., which brought together families, scientists and clinicians. At the gathering, participants pledged to organize a support group for affected families. Those initial participants started to talk regularly and a year later gained certification as a (501(c)3 not-for-profit, independent from any medical institute.
DC occurs in people around the globe and our board members, as well as our medical advisory board, hail from a number of countries. Our mission is to provide information and support to families affected by DC worldwide, to encourage the medical community’s research in finding causes and effective treatments, and to facilitate improved diagnosis by educating medical providers. Our eight-member board holds monthly Skype meetings to plan events, produce education materials, and discuss how to address the needs of our growing community.
Board projects include publishing twice yearly newsletters, fundraising and hosting monthly family support meetings, during which patients can talk to doctors on our medical advisory board. DCO attends annual medical conferences and has undertaken the creation of the first ever protocol for the treatment and management of DC.
Principal to our mission is connecting people with DC–many of whom have never met another with the diagnosis. In October 2010 we hosted the first international conference at Camp Sunshine for patients and their families. The world’s premier DC experts came to deliver presentations to and answer questions from parents while the children enjoyed all the amenities of camp, which is tucked in the wooded shoreline of Lake Sebago, Maine. DCO returned to camp two years later for an even more extraordinary family retreat and plans to return bi-yearly. For more information on attending camp or to view pictures of previous sessions please visit our “camp sunshine” page.
DC Outreach strives be a touchstone within the community and available to anyone with questions or concerns. Our Facebook page: Dyskeratosis Congenita Outreach, Inc. and direct e-mail access to our president and members provides the widely-dispersed and oftentimes isolated DC population almost instantaneous connection to people who want to help.