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.
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.
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.
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.