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 firstname.lastname@example.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!
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 email@example.com so she can send you an invitation with the meeting’s call-in details.
Sunday, October 8, 2017 @ 8pm EST Dr. Souheil El-Chemaly, M.D. - hosted by Rachel Godfrey
Dr. Souheil Y. El-Chemaly is the clinical director of the Center for LAM Research and Clinical Care and a physician at Brigham and Women’s Hospital (BWH). He is also an assistant professor of medicine at Harvard Medical School.
He received his medical degree from Saint Joseph University (Beirut, Lebanon). He then completed a residency in internal medicine at St. Luke’s-Roosevelt Hospital Center , a teaching affiliate of Columbia University College of Physicians and Surgeons. He also participated in two fellowship programs in pulmonary and critical care: the first at the National Heart and Lung Institute (now the National Heart, Lung, and Blood Institute), and the second at the Jackson Memorial Hospital. He is board certified in critical care medicine, internal medicine and pulmonary disease.
Dr. El-Chemaly’s clinical interests include interstitial lung disease, lung transplantation and lymphangioleiomyomatosis (LAM). His recent clinical research examines the impact of interstitial lung abnormalities on mortality and lymphatic vessel formation after lung transplantation. He has written over 30 peer-reviewed publications and has received funding from the National Institutes of Health.
Family Chat schedule for 2017
All times eastern
Sunday, November 12, 2017, 8 p.m., Dr. Tim Olson - hosted by Bruce Friedman
Sunday, December 10, 2017, 8 p.m., Dr. Sharon Savage - hosted by Katie Stevens
Sunday, January 14, 2018, 8 p.m., Dr. Drew Dietz - hosted by Lisa Helms Guba
Sunday, February 11th, 2018, 8 p.m., Dr. Fred Goldman
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Shan Terry"Science didn't understand my kids' rare disease until I decided to study it." - Sharon Terry
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 firstname.lastname@example.org. We welcome any comments, questions or suggestions!