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.  Email katiestevens@dcoutreach.org with your contact info in advance to be added to the call. If you cannot make the call, but wish to ask questions,  please send them via email. Your questions and answers will be posted on https://www.smartpatients.com/  Chat to you soon! 

UPDATE 

DC Outreach’s family chats have always been a place for folks dealing with DC and telomere biology disorders to connect.  The importance and benefit of these calls is clear—since beginning over three years ago, attendance has steadily risen.

Most months the meeting is attended by close to a dozen callers and in order to ensure all of the callers experience good call quality, DCO has upgraded to a new service which allows participants from around the world to use their phone or computer to join in.

Each month at the dedicated time, simply dial one of the many local numbers in the United States, Canada, and sixty other countries, and then input the DCO meeting access code. 

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. 

 

Sunday, May 14  RESCHEDULED; See September chat for Dr. Suneet Agarwal

 

Sunday, June 11th, 2017 @ 8pm EST Ryan Himes, M.D.  

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Dr. Himes is a transplant hepatologist whose expertise is in benign and malignant liver tumors in children. His clinical and research activities converge on defining, measuring and improving value-delivery in healthcare. He leads efforts in the Section of Gastroenterology of the Department of Pediatrics at Baylor College of Medicine and within the Visceral Transplant Program to make Texas Children’s Hospital a national leader in outcomes transparency and improvement.    

 


Family Chat schedule for 2017

All times eastern

Sunday, May 14, 2017, 8 p.m., RESCHEDULED

Sunday, June 11, 2017, 8 p.m., Dr. Ryan Himes

Sunday, July 9, 2017, 8 p.m., Dr. Rodrigo Calado

Family Chat Vacation in August

Sunday, September 10, 2017, 8 p.m.,  Dr. Suneet Agarwal

Sunday, October 8,  2017, 8 p.m.,  TBD 

Sunday, November 12, 2017, 8 p.m., Dr. Tim Olson

Sunday,  December 10, 2017, 8 p.m., Dr. Sharon Savage

Sunday, January 14, 2018, 8 p.m. , Dr. Drew Dietz


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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!


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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!

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