Upcoming Events


Family Chats

DCO hosts monthly family chats and invites a medical doctor or researcher to join us. This provides you with an amazing opportunity to ask any questions you may have of a medical care provider who has knowledge of Dyskeratosis Congenita and Telomere Biology Disorders and the symptoms, tests and treatments that are recommended. Don't feel you have to join in, there are always plenty of questions and if you feel more comfortable listening, you are of course still welcome to join. If you cannot make the call, but wish to ask questions,  please send them via email. 

To join the meeting, email Katie Stevens at katiestevens@dcoutreach.org so she can send you an invitation with the meeting’s call-in details. 

Family Chat schedule for 2018

All times eastern

Sunday, January 14, 2018, 8 p.m., Dr. Sharon Savage - hosted by Lisa Helms Guba

Sunday, February 11th, 2018, 8 p.m., Dr. Fred Goldman

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Click here to find out how you can support DCO in your next race!


Shan Terry"Science didn't understand my kids' rare disease until I decided to study it." - Sharon Terry

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Visit www.GeneticAlliance.org to learn more
Genetic Alliance CEO Details Shortcomings of Nation’s Medical Research Infrastructure in Newly-Released TEDMED Talk
Sharon Terry Shares Family’s Experience with Genetic Disorder and Learning “Ecosystem is Designed to Reward Competition, Rather than Alleviate Suffering”
In a newly-released TEDMED talk that sheds new light on the organizations developing new treatments for disease, the president and CEO of the Genetic Alliance said that biomedical research is hamstrung by a lack of collaboration and data-sharing and that research participants and their families must become “citizen scientists” to revolutionize the system.
In Sharon Terry’s TEDMED talk, she tells the story of she and her husband discovering, in 1994, that their two children, Elizabeth and Ian, were both affected by pseudoxanthoma elasticum (PXE), a rare genetic disorder that causes the symptoms of premature aging. They quickly learned, after being contacted by different research institutions “that there was no systematic effort to understand PXE…researchers competed with each other because the ecosystem is designed to reward competition rather than alleviate suffering.”
The TEDMED talk details how she and her husband, Patrick, educated themselves on the disease and gathered thousands of similarly affected people around the world to initiate studies and clinical trials. Her message is that “citizen scientists, activists using do-it-yourself science and crowdsourcing, are all changing the game.”
Her talk can be viewed at http://www.tedmed.com/talks/show?id=619693.
Dr. Francis Collins, director of the National Institutes of Health, said, “The Terrys have been pioneers in bringing patients and their loved ones to the front lines of medical research, becoming active participants in the search for cures. All of us involved in the pursuit of health progress should take Sharon Terry’s talk to heart and continually re-evaluate the true meaning of patient engagement and patient-centric research.”
In a statement, Sharon Terry’s husband Patrick said, “We’re really heartened that these issues, which affect millions of Americans touched by serious illnesses, are being shared and discussed. Research into lifesaving treatments is too important to be impeded by antiquated ideas and approaches between by physicians, scientists and institutions that refuse to share vital information. Additionally, research participants and their families should be central, and recognized as critical partners in sharing their perspectives and ideas that can advance the solution process. We hope that Sharon’s TEDMED talk captures attention and influences current thinking.”
Take action:
Learn more about how the Platform for Engaging Everyone Responsibly might be useful to your work: http://www.peerplatform.org
Donate to PXE International to support four clinical trials this year:https://www.pxe.org/donate



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Smart Patients is an online community for patients and families affected by a variety of illnesses. Here you can learn at your own level about scientific developments related to your condition, share your questions and concerns with other members, and use what you learn in the context of your own life.


Introduction to the DC/ TBD Patient Survey

To schedule time to chat about the survey, contact rachelgodfrey@dcoutreach.org. We welcome any comments, questions or suggestions!


Community Engaged Network for All (CENA) is one of 29 projects funded by PCORI to form a new national resource that will accelerate health research. In 2014 DC Outreach, Inc. was awarded a place in the project out of 100 applicants. The project is directed by Genetic Alliance and through Private Access will be launching DCO’s first ever family registry. This registry will allow the patients and caregivers themselves to directly influence research by enrolling in the registry and taking the  anonymous survey. Our small network of “Rare” families will have influence in medical research like never before. The survey is completely secure and allows each person to participate in selecting their own privacy level settings.

Help us solve the puzzle… Join the Registry!