Support for EDS Research Funding by EDNF. Please let us know if research for a cure for EDS is important to you. According to the EDNF site, they have not funded grant money towards scientific research since 2005. The following is from the EDNF website: "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." Despite several research fundraising drives, EDNF claims they have not had significant scientific research funding. It is very important to our cause that scientific research be made. We have family and friends who are needlessly suffering and dying from different types of EDS due to lack of scientific research. Do you think EDNF should cut overhead costs to allow for more spending towards outside scientific research to fight EDS?
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Monica Cartwright, Cincinnati, OH, United States2 years ago
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