In 1997, EDNF sponsored a meeting of International experts with the intent of simplifying the classification of the Ehlers-Danlos Syndromes (EDS). The resulting Revised Nosology, Villefranche, 1997, was published in the American Journal of Medical Genetics and paved the way for more accurate diagnosis and greater understanding of EDS by the medical community.
EDNF continues to develop its research program through and for its Professional Advisory Network (PAN).
2006 to present
EDNF has sought and published current research on its website and through its quarterly on-line newsletter, the PAN Hinge, The PAN Hinge provides up-to-date research regarding Ehlers-Danlos syndrome by body systems to medical professionals across the country. Through this publication, EDNF also shares the availability of each of its developed materials which offer researched based information directed for ophthalmology, dentistry, pediatric care, pain management and most recently, vascular Ehlers-Danlos syndrome.
A recent survey among EDNF members has once again revealed the importance for our membership of more research on this complex and difficult syndrome. EDNF continues its policy of funding new studies about EDS and we are very proud to announce the results of the 2005 grant application process.
In partnership with the National Organization of Rare Disorders (NORD), EDNF has again provided the funds for two new seed grants in 2005. Seven proposals were submitted for EDS studies, and of those, five were asked to submit complete proposals. Of the final four submitted; two were selected by the NORD Medical Advisory Committee for an award of our funds. The successful researchers and their projects are as follows:
Robert Wood Johnson Medical School
"Establishing Molecular Basis of Ehlers-Danlos Syndrome by Bio-informatics and Biophysics approaches."
University of Pennsylvania School of Veterinary Medicine
"A Canine Model of Autosomal Dominance of Ehlers-Danlos Syndrome"
To view update on the canine model research, (Read more on this grant here.)
We will publish updates of these studies in future issues of Loose Connections. EDNF is very grateful to those who have supported this crucial effort. These initiatives were made possible by the generous support of EDNF members and their families. You can help us to continue these activities by making an online donation to EDNF
EDNF has funded several meetings of the newly organized Professional Advisory Network as it works towards the production of information and articles that will have dramatic impact on the medical community in both awareness of and knowledge on how to treat those with EDS.
These initiatives were made possible by the generous support of EDNF members and their families. You can help us to continue these activities by donating to EDNF.
EDNF spent over $80,000 in 2004 on research related activities. To more efficiently expedite the study of new treatments & diagnostics for EDS, EDNF entered into partnership with the National Organization of Rare Disorders (NORD) and successfully funded its first ever clinical research grants. Announced in October 2004, the two grants were awarded to the following Investigators:
Peter Byers, MD, University of Washington, Seattle, WA. "Structural studies of arteries by quantitative MRI in vascular Ehlers-Danlos Syndrome (EDS type lV): genotype/phenotype characterization" (Read more on this grant here.)
Richard Wenstrup, MD Cincinnati Children's Hospital Research Foundation, Cincinnati, OH. "High throughput analysis of extracellular matrix gene expression in connective tissue disorders" (Read more on this grant here.)
These initiatives were made possible by the generous support of EDNF members and their families. You can help us to continue these activities by making an online donation to EDNF