Through these efforts, we've helped introduce language about EDS to the House Appropriations bill encouraging increased NIH funding for research. 

"Hypermobile Ehlers-Danlos Syndrome —Hypermobile Ehlers-Danlos Syndrome (hEDS) is an autosomal dominant connective tissue disorder that attacks connective tissues in nearly every organ System. Data from the NIH All of Us research program shows hEDS has a disease prevalence of approximately one in 300. This chronic condition initiates during adolescence or earlier and disproportionately affects females (90 percent versus 10 percent male). Patients with hEDS progress from a normal, active lifestyle to one filled with surgeries and, in severe cases, to becoming wheelchair bound. hEDS takes an average of 14 years to diagnose, partially due to the lack of a clear genetic marker and very little clinical and research attention to date. Patients suffering from hEDS are typically young girls, who undergo an average of six surgeries before reaching the age of 25.

The Committee is aware that researchers recently identified the first disease gene for hEDS and have developed the first hEDS animal model. In order to continue strides forward and expedite translational discoveries of cures, treatments and diagnosis, the Committee encourages NIH to increase support for hEDS related research at academic medical centers where hEDS patients are being treated. This investment could help lead to diagnostic markers of disease and provide the basis for long-term sustainable research programs. In addition, the Committee encourages NIH to evaluate the best approach to establishing multi-institution centers that can serve as regional institutes to spur earlier diagnosis and improved treatment, care, education and mechanistic understanding of hEDS."