Policy Committee Meeting

Approval of Last Meeting Minutes

Rae Blaylark made a motion to approve meeting minutes from May, June and July of 2024. Dawn Stenstrom seconded. Motion passed and minutes approved.

Ongoing Business

Community Forum Recap and Next Steps:

Director Barnes reported that this is the Council’s second forum this year and that we will continue to hold them when a reportable need arises. Provided further detail on forum content and next steps. Recap was followed by questions from committee members.

Policy Manager Hire Discussion:

Director Barnes reported that she is reviewing two (2) contracts currently, one related to the policy priority of a gene therapy taskforce. In addition, RDAC is hoping to hire a policy manager by October 2024.

New Business

Review of deliberation framework and Initial 2025 Legislative Planning:

Director Barnes noted that the Insights Report will be available at the next Full Council meeting and that the PSC will get the first chance to look at the proposed deliverables. A request was made for an environmental scan for the 2025 legislative session. The Full Day Council retreat identified gene therapy access as well as trauma informed mental health care specific to rare diseases. There was also discussion regarding revisiting legislation that was not passed last year as well as some suggested new legislation initiatives. Funding for RDAC, structural changes to the council were topics.

Introduction of some Potential Policy Actions:

The new initiatives will be provided in the insights report and made available to the PSC prior to the Full Council meeting in September.

Public Comment

Hearing none.