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, April 9  @ 8 p.m. Eastern --  Dr. Khaled Tawansy

       Dr Khaled Tawansy_0.jpg

  Dr. Khaled Tawansy is a world-renowned Vitreo-Retinal Surgeon and a Professor of Ophthalmology and Pediatrics. He directs a busy clinical practice in Southern and Central California dedicated to the management of complicated pediatric and adult retinal disorders, including Trauma, Surgical Complications, Retinopathy of Prematurity (ROP), Diabetic Retinopathy, Retinal Detachment, Uveitis, Macular Degeneration, and Hereditary Vitreo-Retinopathies. He is a regular lecturer at meetings and university teaching rounds in Southern California and Internationally.
Dr. Tawansy earned a Bachelor’s degree in Biomedical Engineering with Tau Beta Pi Honors at Johns Hopkins University and a Doctorate of Medicine with Honors at the University of Michigan. He completed residencies in Internal Medicine at the University of California and in Ophthalmology at Henry Ford Medical Center, where he was awarded by the faculty Resident of the Year. He subsequently performed fellowship training in Ocular Pathology at Johns Hopkins University, Vitreo-Retinal Surgery at the University of British Columbia, Retinal Pathophysiology and Macular Diseases at Vanderbilt University with Professor Donald Gass, Ocular Ultrasound and Trauma at the Schepens Retina Foundation, and Pediatric Retinal Diseases and Uveitis at Harvard School of Medicine. During his training, he became part of the teaching faculty and founded pediatric retinal programs at Vanderbilt and UBC. He received Faculty Teacher of the Year and Surgical Instructor of the Year awards from Vanderbilt before he was recruited by the University of Southern California in 2001.


Family Chat schedule for 2017

All times eastern

Sunday, May 14, 2017, 8 p.m., Dr. Suneet Agarwal

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. Frederick T. Goldman

Sunday, October 8,  2017, 8 p.m.,  Dr. Ivan Rosas

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


MDBR2017.jpg 
 

 

Welcome Katie2.jpeg

                                     


sessions screenshot.png


smart patients logo 2.png

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!


CENALogoWeb-011-300x149.png

 
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!

GAlogo-01.png