Kansas City, MO – September 29, 2026
Rare KC and BioNexus KC, are thrilled to announce Brooke Hilst as Executive Director of Rare KC. She brings more than a decade of nonprofit leadership experience, most recently serving in executive leadership roles with the Arthritis Foundation, where she managed key aspects of the organization, including multi-market operations, fundraising initiatives, board engagement, and community partnerships. Hilst will serve as Rare KC’s first full-time employee, marking an important step in the initiative’s continued growth and development.
“I’m delighted to welcome Brooke as Rare KC’s new Executive Director at an important time in the growth of the organization,” said Dennis Ridenour, President and CEO of BioNexus KC. “Her nonprofit leadership experience makes her the ideal person to spearhead the Rare KC mission and expand its impact to better serve the rare community across our region.”
Hilst’s extensive experience leading mission-driven nonprofit organizations and fundraising programs, combined with her strong relationships across the Kansas City healthcare and nonprofit communities, positions her to deepen Rare KC’s continued commitment to supporting individuals and families affected by rare diseases throughout the region, while building greater awareness, engagement, and impact.
“I’m thrilled to join Rare KC as Executive Director and to help strengthen connections within the rare disease community,” Hilst said. “I understand the importance of bringing awareness and attention to disease types that are less prevalent or more difficult to ‘see,’ and I’m passionate about connecting patients, families, healthcare providers, researchers, advocates, and community partners in that work. Through my experience serving patients, I’ve developed my skills in storytelling, and I can’t wait to put them to work for Rare KC.”
The Rare KC Executive Director will serve as the chief operator and lead ambassador – owning execution, accountability, and outcomes. Hilst’s leadership will build on Rare KC’s partnership with BioNexus KC, which brings patients, caregivers, clinicians, researchers, and industry partners into closer collaboration to expand patient engagement, strengthen support for families affected by rare genetic conditions, and connect the community with more coordinated resources across the Kansas City region.
Rare KC was created to connect the rare community – to empower our voices and inspire innovation throughout the medical and research community – all for the single purpose of rare. We bring together both the passion and resources of our rare community in order to elevate our strength in numbers and foster an environment of hope for ourselves, and everyone else that joins us in this journey. Rare KC transforms the lives of those touched by rare genetic conditions by ensuring every person impacted by rare has a pathway to follow and a future of hope.
The Kansas City region is a global leader at the nexus of human and animal health, and BioNexus KC plays a central role in advancing that leadership. As a regional convener and catalyst for life sciences innovation, BioNexus KC is uniquely positioned to promote scientific advancement and strengthen the impact of the region’s research ecosystem.
BioNexus KC stimulates collaboration, accelerates the translation of emerging technologies from concept to real-world application, and creates opportunities at the intersection of:
Through strategic partnerships, data-driven initiatives, and support for regional innovation, BioNexus KC advances life sciences research that drives scientific progress and innovation.
Media Inquiries:
Shaylee Yount, Director of Marketing
BioNexus KC
Shaylee@bionexuskc.org
