Executive Sub Committee Meeting

Approval of minutes (March 11, 2025)

ACTION: Representative Reyer made a motion to approve the March 11, 2025, meeting minutes, motion seconded by Representative Murphy. Motion passed 5-5.

Executive Director Updates

Legislative Update

Director Barnes gave a brief overview of the bills currently under legislation. A special session is anticipated for the 2025 legislative session, however, not certain. RDAC will continue to update RDAC on bill motion or needs.

NBS Screening Committee/Updates and Letter Reception

Director Barnes was in Washington as a speaker for MLD on the Hill last week. It was recommended by the Executive Subcommittee that the MN RDAC lead on a combined letter regarding the disbanding of the ACHDNC (Advisory Committee on Heritable Disorders in Newborns and Children). MN RDAC has been asked to send a letter to the Minnesota House and Senate representatives on the federal level. Next, the letter will be revised to include other national RDACs.

Executive Director Report

Director Barnes introduced RDAC’s new Programs Manager (absent) to the ESC. Sarah Dicks comes to RDAC with a wide base of program knowledge. Her last position was with the MN Disability Determination Unit.

Director Barnes presented the ESC with the first Executive Director report. She provided an overall view of the upcoming budget. She provided the ESC with the activities of RDAC in community outreach, speaking engagements, engagement with other state agencies and departments. Director Barnes noted that the ECHO Learning Series contract with MMB is ending. The work will continue with the addition of RDAC’s new programs manager. The Programs Manager has also been working on information sharing toolkits for patient advocacy groups as well as a toolkit for members of the rare community to create non-profits.

Next Steps

Executive Director job description updates and discussion

Chair Tilstra noted that the ED’s review is in June 2025. It was agreed that the Chair and Vice Chair will work together on the job description edits to have ready in time for that review. RDAC will work with the Council to facilitate changes with the Department of Administration’s human resources.

Conferences and Events

The ESC has asked that policy makers with RDAC be informed about upcoming conferences and events. It has been requested that RDAC staff put out a monthly/quarterly conference/event list. Policy makers can choose conferences that will assist in making informed decisions.

Public Comment

None