The following aims and priorities are part of our commitment to the advancement of Ehlers-Danlos research, patient care, awareness, and advocacy—worldwide.
There are thirteen types of EDS—and we have identified the molecular mutation for all of them, except for the most prevalent, the Hypermobile form. We desperately need to fund the research that will uncover the genetic mutation(s) underlying hypermobile EDS to improve its diagnosis, management, and care.
To date, there has never been an international registry for The Ehlers-Danlos syndromes and related disorders. Although we cannot yet prove numbers of those affected, we know that it is one of the neglected, misdiagnosed, and underdiagnosed disorders in modern medicine and massively mis- and underdiagnosed. In addition to learning more about the life-threatening vascular form, and thus, saving more lives,; building an international patient registry will help us to know more about:
- The epidemiology of Ehlers- Danlos syndromes (EDS) and related disorders and show the prevalence of all forms of the Ehlers-Danlos syndromes and hypermobility spectrum disorders (HSD).
- The underlying causes of Ehlers-Danlos in all its variations, including the rarest forms.
- The relationships between EDS/, HSD, and the multissystemic associations, such as neurological, mast cell, and gastrointestinal features.
- Help us build and maintain and build this critical foundation stone in the for the future research and development of theseis conditions. Years of discovery and advancement can come out of learning more about the people from all over the world who are living with this from all over the world
Professional Education and Management
Because there are so few medical professionals who are educated and empowered to diagnose and treat Ehlers-Danlos/HSD, too many people deteriorate to the point where they are disabled, deconditioned, in wheelchairs, or bed bound—and unable to break the cycle of chronic pain, fatigue, and helplessness.
To combat this, The Ehlers-Danlos Society is committed to educating the next generation of medical professionals—and supporting their research—helping them to properly diagnose EDS/HSD earlier in their patients’ lives in order to build sustainable, personalized, treatment, management, and support regimens for each EDS/HSD patient they encounter. Ultimately, this will save health care providers’ time and money, sparing patients from the agonizing torment trying to find someone who will believe them, diagnose, and manage their condition.
With further research, we seek to find new ways for people living with EDS/HSD to cope with the physical, emotional, and life challenges they face, including chronic pain.
The Ehlers-Danlos Society Center for EDS Research & Clinical Care
The Ehlers-Danlos Society has partnered with the Greater Baltimore Medical Center (GBMC) to establish the EDS 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 explored and where medical professionals can learn about the Ehlers-Danlos syndromes and hypermobility spectrum disorders.
YOUR support of The Ehlers-Danlos Society 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 Ehlers-Danlos Society 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 and HSD. 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 EDS Center. We hope to hold Physicians Conferences annually, 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 Ehlers-Danlos Society Medical and Scientific board, 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, and others, 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.
Patient Support and Community Outreach
For far too long, the Ehlers-Danlos patient community has been isolated, fragmented, and ignored. With the advent of social networks, The Ehlers-Danlos Society now reaches near 100,000 people living with Ehlers-Danlos and HSD each year. Our experienced team of peer counselors provides outreach, counsel, mentorship, and support through private public and private interactive discussion boards, our helpline, regional and national events, and our magazine Loose Connections.
As awareness builds and our community expands, our capacity to provide patient support and outreach becomes more even more critical. Each gift to this area provides an opportunity to directly affect individuals throughout the world who are living with EDS/HSD.
Research is at the core of what we do. However, despite advances in technology, facilitating collaborative research, especially in the area of rare disorders, can be difficult. Indeed, nearly every leap in Ehlers- Danlos research, nosology, and management has been the direct result of the connections facilitated by international gatherings of the world’s top researchers and medical professionals.
Through the open exchange of findings, ideas, and disagreements, we’ve seen extraordinary progress in our understanding of Ehlers- Danlos—and its relationship with countless related disorders. From our March 2016 International Symposium in New York, attended by over 200 of the world’s top Ehlers-Danlos researchers and medical professionals—to the subsequent gatherings of the International Consortium throughout the world—each meeting of the minds has led to positive advances in the study of EDS and HSD, culminating in the publication of a new International Classification and eighteen new papers in the American Journal of Medical Genetics in March 2017.
Through the consistent support of our major donors, The Ehlers-Danlos Society seeks to continue facilitate medical symposia and professional training on a regular and worldwide basis. From travel grants to presentation technology, every gift counts toward the advancement of Ehlers-Danlos research.
This is our time
With a dedicated International Consortium of the world’s foremost researchers, caregivers, and clinicians; an energetic, innovative board of directors and management team; and nearly 50,000 supporters throughout the world, the future has never been brighter for The Ehlers-Danlos Society and the study of Ehlers-Danlos syndromes and related disorders.
With your help, The Ehlers-Danlos Society—and our affiliated scientific researchers and medical professionals—stand ready to launch the next phases of Ehlers-Danlos research. Together, we are determined to bring hope to those living with Ehlers-Danlos syndromes and related disorders. With each new discovery, their lives and the lives of their families will improve through better, more consistent diagnosis, management, and care.