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:
- 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.
- Collect and share data on rare diseases.
- Identify technology platforms that are relevant for rare disease treatments.
- Coordinate rare disease collaborations across the state to including academic medical centers, investigators, funding agencies, biotech companies, and advocacy groups.
- Highlight collaborations between clinicians and investigators.