Ryan Rodarmer
Director, the Veds Movement @The Marfan Foundation
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WORK HISTORY
Director, the Veds Movement @The Marfan Foundation
Port Washington, NY, US
Lead division strategy and community relationships; serve as liaison to the VEDS community and coordinate with the Professional Advisory Board and Foundation staff on priority initiatives.• Community relationships include families & volunteers (VEDS Steering Committee), clinicians/advisors (select PAB members), partner nonprofits/institutions, and donor prospects/supporters.• Build and scale programs in support, education, and research (website, support groups, webinars, symposiums, conferences); partner with the Development team to secure program funding.• Coordinate and monitor professional education (CME/Grand Rounds).• Identify knowledge/support gaps through community conversations; develop practical resources in response.• Support VEDS/genetics inquiries via the Help & Resource Center with timely, accurate guidance.• Oversee communications and social channels with Marketing & Communications; engage community volunteers via the VEDS Steering Committee.• Established programs: Medical ID Program, Virtual Support Groups, CME/Grand Rounds, Walk for Victory, VEDS Action Month.• Current initiatives: Patient Story/Photo Repository; international VEDS network; future NORD VEDS page; VEDS specialist fact sheets; planning for VEDS Action Month 2025 with related web/content updates.Highlights• Psychological Considerations in VEDS: A Guide for Mental Health Professionals (FY2025).• Emergency preparedness components completed: personally designed the sticker/magnet system, coded/built VEDS911.com, and launched a streamlined wallet card with “at-a-glance” household prompts.• VEDS website interim improvements (multi-phase).• In progress: Full Emergency Preparedness Kit overhaul + thevedsmovement.org updates (target Action Month 2025); medical community publications (case challenge, emergencies article); fundraising & donor relations (toward $50K in major gifts and ≥3 new donors, FY2025/26).
EDUCATION
Wayne State University
Master of Science - MS, Genetic Counseling/Counselor
Grand Valley State University
Bachelor's degree, Biology/Chemistry
ABOUT RYAN RODARMER
I help people with VEDS feel prepared, connected, and heard — and I help clinicians…
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