Dyskeratosis Congenita Outreach is a community of people linked by similar stories. Our lives are a patchwork of challenge and triumph, joy and heartbreak. Through it all, we remain hopeful knowing that we are not alone. As each day passes, more about our condition is known and with that knowledge the promise of better treatment. On our website you can find doctors who specialize in caring for us and our family members; people with shared experiences who want to listen; and the latest in potential breakthroughs in research and therapy. If you’re recently diagnosed, you can find basic facts as well information on registering for a national database of families like yours that’s maintained by the National Institute of Health. If you’d like to meet other patients, join us during a support group meeting. We’d love to have you!
We are here to help--you are not alone.
Our mission is to provide information and support services to families affected by Dyskeratosis Congenita worldwide, to encourage the medical community's research in finding causes and effective treatments, and to facilitate improved diagnosis by educating medical providers.
Disclaimer: Medicine is a constantly changing science and not all treatments are clearly established especially with such a rare disease. New research changes drug and treatment therapies daily. The authors, editors, and publisher of this website have used their best efforts to provide information that is up-to-date and accurate and is generally accepted within medical standards at the time of publication. However, as medical science is constantly changing and human error is always possible, the authors, editors, and publisher or any other party involved with the publication of this article do not warrant the information in this article is accurate or complete, nor are they responsible for omissions or errors in the article or for the results of using this information. They are also not responsible for any of the statements made by individuals posting their own stories or experiences on this site.
DCO Has a New Address
DC Outreach is happy to announce we have a new mailing address! Donations and other correspondence can now be sent to:
Dyskeratosis Congenita Outreach, Inc.
1562 First Ave. #205-4093
New York, NY 10028-4004
DCO Welcomes New Board Members, Elects Officers
In December, the DCO Board of Directors elected a new president, vice-president and treasurer as well as voted-in three new board members. Robin Huiras will serve as president of the group for one year; and for the next two years former treasurer Dave Phillips will serve as vice-president and new board member Lisa Helms Guba will serve as treasurer. In addition to Lisa, Rachel Godfrey and Donna Martin have joined the board for two-year terms.
DC Outreach Chat Groups
The second Sunday of every other month the DCO board hosts a virtual chat group on Skype, where families can meet and speak directly with others affected by DC. A member of our medical advisory board joins the call to answer questions and provide information on managing and treating the disease. Signing up is easy. Please click here for more info on how to join us. The DCO board meetings immediately follow the chat groups. Please feel free to listen in. Just let us know in advance if you would like to sit in on one of our meetings.
Our dates for 2014 are:
March 9, May 4, July 13, Sept. 14, and Nov. 9
Our dates for 2015 are: