Updated: Apr 12
The past year has been challenging for everyone and those within the vascular Ehlers-Danlos community were no different. Support is an extremely important part of living with a rare disease and 2020 meant many canceled plans to convene the vEDS community and fewer in-person visits with family and friends.
Despite the challenges, 2021 is shaping up to be one of the most important years for the vEDS community that we can remember - stay tuned to FIGHT vEDS for updates...
2020 in Review
2020 was an important year of growth for FIGHT vEDS. As an online destination for those learning about vascular Ehlers-Danlos, our resources were accessed more than ever. And 234 donors contributed to support our cause, giving us funding to grow our efforts.
At FIGHT vEDS we have three components to our mission:
Providing educational content, presented in a way that's easy-to-understand
Enabling patients to receive low-cost genetic testing
Supporting research to develop a vEDS treatment
On the educational front, we had over 2x growth in site visitors in 2020 - with people coming from over 60 countries globally to learn about vascular Ehlers-Danlos in a way that patients can understand.
We helped over 400 people get access to low-cost genetic testing options (typically $50-$400 in the United States), which they can do from home and have answers in weeks. For those unfamiliar with testing for rare diseases, it used to require finding a physician willing to test for this very rare condition and sometimes thousands of dollars and months before a patient had an answer.
And finally, we've been actively engaging the research community, both through our ongoing work with university researchers as well as pharmaceutical companies exploring investing in vEDS treatments.
Looking Ahead to 2021
We are extremely excited about 2021 and FIGHT vEDS is looking to continue to advance its mission through:
Education: Enhancing the educational content available on FIGHTvEDS.org
Genetic Testing: Developing a new campaign to provide greater awareness to genetic testing options
Research: We believe that some of the most exciting vEDS research to date is on the horizon. FIGHT vEDS will continue to support researchers to push for a treatment and we believe 2021 will be a big year!
Please subscribe to updates (at the bottom of our homepage) to stay up to speed on new projects and potential treatments.
And thank you to everyone who has supported FIGHT vEDS and our mission over the past year!