Earlier this month, VeDA Executive Director Cynthia Ryan attended the National Organization for Rare Disorders (NORD) Breakthrough Summit in Washington, D.C., where nonprofit, research, and advocacy leaders gathered to advance the voice of patients living with rare diseases.
Throughout the event, Cynthia promoted vestibular awareness—helping fellow advocates and healthcare professionals recognize how balance disorders intersect with the broader rare disease community. She also participated in sessions focused on patient registries, data sharing, and healthcare advocacy, learning how collaborative approaches can accelerate research and improve access to care for people living with rare and often misunderstood conditions.
Executive Insights: Balancing Vision, Resources, and Well-Being
Cynthia was honored to serve on an Executive Director Insights Panel alongside Rhonda Rowland (Wilson Disease Association) and Ryan Maple (Global Foundation for Peroxisomal Disorders). The discussion, “Balancing Vision, Resources, and Well-Being,” explored how nonprofit leaders sustain impact while supporting their teams and avoiding burnout.
Drawing from her 14 years leading VeDA, Cynthia shared lessons in strategic planning, delegation, and organizational balance—including how systems thinking and role clarity help small teams thrive. She emphasized the importance of building strong operational foundations—fundraising, communications, and data management—to support sustainable growth and advocacy.
In one exchange, Cynthia described how VeDA uses tools like Menti and Asana to make prioritization transparent and ensure that every project aligns with VeDA’s mission and available resources. She also highlighted her approach to leadership as deeply empathetic and relational, fostering connection and recognition among both staff and volunteers.
“Invest in yourself first,” Cynthia told attendees. “The better trained, informed, and balanced you are, the more useful you’ll be to your organization. The same goes for your team—care for people first, and the mission will follow.”
A Shared Commitment to Advocacy
Reflecting on the conference, Cynthia said she was “humbled by the passion and dedication of the rare disease advocates who show up every day to make life better for others.” She also expressed deep appreciation for NORD’s leadership and support, which help organizations like VeDA connect with a broader network of patient voices and resources.
“Whether we’re talking about vestibular disorders or any other rare condition,” Cynthia noted, “we’re all working toward the same goal—visibility, understanding, and better care. Together, our collective voice is stronger.”
