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 opened in Baltimore on August 16, 2014, and provides comprehensive clinical care for patients, professional education for physicians, and cutting-edge research. It is a place where new treatment options for patients are begin explored and where medical professionals can learn about Ehlers-Danlos syndrome.
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 focuses on the following:
Clinical Care. The Center provides comprehensive, multi-disciplinary clinical care for patients with EDS. During their visit, patients are seen by multiple specialists, enabling 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.
Professional Education. Since most medical professionals are unfamiliar with the disease and its treatment, the result is patients who are misunderstood, misdiagnosed and mistreated. On September 15, 2014, we held our first Physicians Conference, which marked the beginning of the educational program at the EDNF Center. These Physicians Conferences will be an annual event, with live webinars throughout the year. Our desire is to give medical professionals worldwide the opportunity to learn about EDS.
Research. With the assistance of the EDNF Physicians’ Advisory Network, EDNF currently provides a series of Medical Resource Guides, also known as MRGs. These resources 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.