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EDNF Center for Research & Clinical Care

In March 2013 EDNF and GBMC entered into an agreement to establish the EDNF Center for Research & Clinical Care and sent out a video to EDNF members and friends to introduce the plans for the Center.

EDNF has partnered with the Greater Baltimore Medical Center (GBMC) to establish the EDNF Center for Research & Clinical Care at GBMC’s Harvey Institute for Human Genetics. This premier EDS research and treatment facility will open in Baltimore on August 16, 2014, and will provide comprehensive clinical care for patients, professional education for physicians, and cutting-edge research. It will be a place where new treatment options for patients can be explored and where physicians can learn about EDS.

YOUR support of the EDNF Center is essential to its success. The minimum amount needed to operate is $250,000 per year. This covers only the basic operating expenses of this multidisciplinary clinic including: personnel, materials, equipment, exam room construction, and professional education. Your contribution will assist us in providing education, clinical care and research. Please help today.

The EDNF Center for Research & Clinical Care at GBMC’s Harvey Institute for Human Genetics will focus on the following:

Clinical Care. The Center will provide comprehensive, multi-disciplinary clinical care for patients with EDS. The plan will be for patients to visit to the Baltimore-Washington area for 2-3 days and be seen by 5 or 6 specialists during their visit. This would enable them to meet with and address most, if not all, of the complications they are experiencing, including specialists in: genetics, cardiology, neurology, neurosurgery, imaging, cognitive psychology, sleep disorders, immunology, pain management, orthopedics, ophthalmology, and otolaryngology.

Our plan includes offering monthly webinars where patients can learn about EDS and ask physicians general questions about living with EDS. These specialists will give short presentations about what they see when EDS patients come into their offices and make general recommendations about management from their perspective. In addition, for patients who have limited financial resources, we would provide assistance for travel expenses and costs for durable medical equipment.

Professional Education. Since most medical professionals are unfamiliar with the disease and its treatment, the result is patients who are misunderstood, misdiagnosed and mistreated. By educating the medical professionals, EDNF hopes to alleviate the suffering, both to newly diagnosed patients and to long-term patients. Our plan is to begin this training next August by hosting a Physician’s Training Conference at the Greater Baltimore Medical Center in conjunction with the Center’s ribbon-cutting. A select group of medical professionals who specialize in EDS will provide a one-day conference to discuss the diagnosis and treatment of EDS patients. We hope to simulcast this conference and to retain the information for future webinars which can be made available on the EDNF web site. Our desire is to give medical professionals worldwide the opportunity to learn about EDS and to earn Continuing Medical Education credits. Our priority is to educate internists, pediatricians, emergency room physicians, physical therapists, neurologists and neurosurgeons. Professional education also includes presentations made at the GBMC Grand Rounds, as well as programs developed and exported to other hospitals in the Baltimore-Washington area and eventually throughout the US and the world.

Research. With the assistance of the EDNF Physicians’ Advisory Network, EDNF currently provides a series of Medical Resource Guides, also known as MRGs (including a general Ehlers-Danlos MRG, as well as MRGs for Dentistry, Pain Management, and Ophthalmology. There is a Vascular Type MRG and accompanying Clinical Reference Manual, as well as The Ehlers-Danlos Child: A Guide for Educators and Parents, and a Medical Alert Wallet Card.) These resources contribute to the EDS research and are a ready-reference for those interested in learning about the disease. All medical documents are thoroughly reviewed by our Professional Advisory Network prior to publication. The future research plan includes learning more about the molecular underpinnings of EDS. In conjunction with personnel from Johns Hopkins and NIH, including a working group of neurologists, neurosurgeons, psychologists, geneticists, etc., a strategy will be designed to understand the complications of the disease. We anticipate performing whole exome sequencing on families with clearly defined hypermobile EDS.

Creating Knowledge
Building Community
Promoting Change