Our Partners

Alliances formed to help build the voices of RARE

We are a community of patients, families, caregivers, researchers, practitioners, as well as industry and thought leaders, driving innovation in the way Kansas City diagnoses, treats and cares for people affected by rare diseases.

Our partners include nonprofit, healthcare, academic, research and industry organizations that believe collaboration is the key to positive change.
KU Med Campus

University of Kansas Medical Hospital

RareKC is leading the way in establishing Kansas City as a hub for rare disease diagnosis, care, and treatment. By staying connected to national rare disease efforts, RareKC is using partnerships with the University of Kansas Medical Center and other area hospitals to develop recognized best practices around coordinated care and patient-provider engagement.

Children's Mercy Adele Campus

Children's Mercy Hospital

RareKC and CMH have a long-standing partnership that has resulted in successful initiatives like the Patient Family Advisory Council and the recently launched Genomic Answers for Kids, a first of its kind pediatric data repository geared towards providing better, faster answers for families of children with rare conditions and developing novel treatments for rare genetic conditions.

KU Frontiers

Frontiers: University of Kansas Clinical and Translational Science Institute

The RareKC and Frontiers collaboration has reaped important benefits for rare disease research in our region. RareKC continues to support Frontiers in its efforts to accelerate the translation of research into new therapies, treatments, and cures by facilitating connectivity between regional clinicians, researchers, and rare disease patients in Kansas City.

National Partners

Life Science Supporters

Local Advocacy Organizations

Kansas City Plaza Fountain
A special thank you to our supporters in the Kansas City community

We are a part of the Global Advocacy Alliance, a network of rare disease organizations and associations that are committed to collaborating in order to create a stronger collective voice in the rare disease community. We are so proud to join a community that aligns with RareKC’s mission of increasing rare disease awareness and advocating for greater rare disease research while connecting networks of health liaisons to rare patients.

Global Genes
We’d love to have you engaged and supporting our efforts to better the lives of rare patients in Kansas City.
Together we can connect and inspire the rare disease community to transform the lives of those touched by rare diseases.