The expected opening date of the EDNF Center is August 2014. Donations can be dedicated to the EDNF Center through our donations form in the store by clicking here.
We need your help:
We seek to improve the experience of EDS in our lifetimes.
Our Goal: Realizing the dream of physician training, clinical advancement and research.
EDNF seeks your support in endowing a facility that will be the world center for EDS, from physician training and clinical practices to scientific research. The opportunities are boundless; you can help the lives of children and families by advancing the progress towards solving a genetic disorder that affects the fundamental tissue of the body.
There are a series of partnership and support levels that will ensure your participation is recognized. You have the chance to join us in this life-changing endeavor and improve our future, from site selection through scientific breakthroughs and beyond.
This is just the beginning. Our dream does not end with one center: we envision a global network of centers working towards a cure.
You can help our dream come true.
Announcement Press Release
New Center For Ehlers-Danlos Research at Towson Hospital's Genetics Program in Baltimore
Clinical research, education and treatment for Ehlers–Danlos syndrome (EDS), a group of inherited connective tissue disorders for which there is no cure, took a significant step forward today with the establishment of the Ehlers-Danlos National Foundation Center for Clinical Care and Research at GBMC's Harvey Institute for Human Genetics. May is Ehlers-Danlos Syndrome Awareness Month, and the disease is believed to affect about one in 2,500 to one in 5,000 individuals worldwide.
Funding from the Ehlers-Danlos National Foundation (EDNF) will support a virtual center at Greater Baltimore Medical Center (GBMC) under the direction of Clair Francomano, MD, GBMC's Director of Adult Genetics. The Center will provide comprehensive clinical care for patients, professional education for physicians, and develop research. Elliot Clark, EDNF Board Chairman, and Shane Robinson, EDNF Executive Director, were on hand at GBMC to formally sign an agreement officially announcing the partnership between EDNF and GBMC.
"We are extremely grateful to EDNF for their support which will allow us to explore new treatment options for patients and raise awareness among physicians. It is our hope that these efforts will lead to earlier diagnosis and better treatment options for patients with EDS, and provide the opportunity for continued research into the causes of EDS," said Dr. Francomano. "Knowledge concerning the underlying causes of the disease will enable us to seek rationale therapies for this complex and disabling condition."
"Partnering with the Greater Baltimore Medical Center to open the first ever EDNF Center for Clinical Care and Research is an exciting new initiative for the foundation," Clark said. "EDS often goes undiagnosed because physicians are not aware of the disease. The funding EDNF is providing to establish this clinic is a major step forward in advancing our mission to educate healthcare practitioners and patients and provide treatment to help people living with EDS."
About Dr. Francomano
Dr. Francomano received her undergraduate degree at Yale University and her medical degree from The Johns Hopkins University School of Medicine. She trained in internal medicine and medical genetics at Johns Hopkins and joined the full-time Hopkins faculty in 1984. She joined GBMC's Harvey Institute of Human Genetics in 2005. Dr. Francomano is an Associate Professor of Medicine at Johns Hopkins University School of Medicine. She has held positions as Clinical Director and Chief of the Medical Genetics Branch at the National Human Genome Research Institute, National Institutes of Health and Chief of the Human Genetics and Integrative Medicine Section in the Laboratory of Genetics, National Institute on Aging.
Dr. Francomano is board-certified in internal medicine, clinical genetics and clinical molecular genetics. She is a member of the American College of Physicians, the American Society of Human Genetics and the American Society for Clinical Investigation, and is a founding fellow of the American College of Medical Genetics.
In 2008, and every year since, Dr. Francomano has been named among "Baltimore's Best Medical Geneticists" by Baltimore Magazine. Her clinical and research interests include the hereditary disorders of connective tissue and skeletal dysplasias. She received EDNF's Shining Star award in 2012 for her dedication to people with EDS.
GBMC HealthCare system includes Greater Baltimore Medical Center, a 270-bed acute care not-for-profit hospital which opened in 1965 and provides "Health, Healing and Hope"; Greater Baltimore Medical Associates, a group of more than 40 multi-specialty physician practices on the hospital's Towson campus and locations across the region; Greater Baltimore Health Alliance, an alliance of GBMC-employed and private practicing physician partners; Gilchrist Hospice Care, Maryland's largest hospice organization offering care in-home as well as in a 34-bed inpatient center on the GBMC Towson campus and at a 10-bed inpatient center in Howard County; and the GBMC Foundation, which raises funds to support the organization's mission. For more information, visit www.gbmc.org.