KS Rare Disease Advisory Council

Consisting of rare disease advocates including providers, researchers and patients, a Kansas Rare Disease Advisory Council would provide guidance to Kansas lawmakers on research, diagnosis, treatment and education related to rare disease.

Establishing a council will leverage the rare disease networks that currently exist in Kansas and could potentially accomplish the following:

  1. Unite health care providers with medical education partners, KC DHHS, and patient advoacy groups to implement the best strategies available for the rare disease population.
  2. Collect and share data on rare diseases.
  3. Identify technology platforms that are relevant for rare disease treatments.
  4. Coordinate rare disease collaborations across the state to including academic medical centers, investigators, funding agencies, biotech companies, and advocacy groups.
  5. Highlight collaborations between clinicians and investigators.