On January 31st we published a blog post regarding the vascular EDS collaborative survey— an anonymous survey for patients with a clinical diagnosis of vascular Ehlers-Danlos syndrome. This was sponsored by the University of Washington and the Vascular Ehlers-Danlos Collaborative, which the FIGHT vEDS team is a founding member of.
We are thrilled by the response - over 300 vEDS patients responded; a large number in a rare disease! The research is being funded through a grant received from the Patient-Centered Outcomes Research Institute (PCORI). Patient participation is important because this grant helps give patients the opportunity to direct research in vEDS. The survey enables us to show PCORI how engaged the vEDS community is and hopefully positions us for future funding.
Thanks to all of our subscribers who have contributed to the survey.
We will keep you updated as the results of the survey are released!