Our Mission
The VEDS Movement mission is to save lives and improve the quality of life of individuals with Vascular Ehlers-Danlos Syndrome (VEDS). By pursuing the most innovative research, educating the medical community, general public and affected individuals, and providing support to patients, families, and caregivers, we can charge forward and improve the outcomes for those living with VEDS.
The VEDS Movement is directed by Ryan Rodarmer, a veteran cardiac genetic counselor and type A aortic dissection survivor due to hereditary thoracic aortic disease, and Josephine Grima, PhD, the chief scientific officer of The Marfan Foundation. The Movement is guided by a VEDS Steering Committee and has the support of the entire Marfan Foundation staff, and the Professional and Scientific Advisory Boards.
Our Values
Alongside our mission, we hold these core beliefs and values:
We put people at the heart of all we do.
Marfan, Loeys-Dietz, VEDS, Stickler, and related conditions can impact physical and mental health and well-being. Genetic aortic and vascular conditions affect individuals and the people who love them. We stand with the whole community, celebrate all people, and honor our richly diverse Marfan Foundation family.
We champion earliest diagnosis.
Early detection saves lives and transforms futures. We accelerate research, awareness, and education to make the earliest possible diagnosis the standard of care everywhere.
We drive bold innovation.
We invest in cutting-edge science, high-impact programs, and trusted resources to advance research, improve treatments, and deliver the most accurate information to our community.
We empower our community to thrive.
Our work is about more than survival—it’s about thrivership. Through research, education, and support, we equip community members to define and live their best lives.
We create powerful connection.
Connection fuels progress and belonging. From convening global experts to sparking friendships at local events, we create vital pathways that unite and strengthen our community.
We advance hope and honor reality.
Marfan, Loeys-Dietz, VEDS, Stickler, and related genetic aortic and vascular conditions bring profound personal challenges and complex scientific hurdles. We hold space for these realities as we drive research, foster collaboration, and provide support—working together toward better care, better outcomes, and brighter futures.
We honor generosity with unwavering integrity.
Our community’s trust is sacred. With 82 cents of every dollar going directly to mission programs—and top ratings from Charity Navigator and Guidestar—we steward every gift with transparency, accountability, and gratitude. We uphold the highest standards of governance, including a strong Conflict of Interest Policy, Whistleblower Policy, and Privacy Policy.
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