Policy Committee Meeting

Executive Director Update

Natalie Schmidt is our new Policy Manager and was unable to attend due to scheduling conflicts.

Policy Engagement Updates

Lead:

Three (3) of the lead bills are currently drafted. They are calling out leaders and reaching out to Advocacy
groups to build a coalition.

Chair Noor asked that RDAC sit on the Health and Human Services committee. Senator Hoffman would also like
to see RDAC on the committee.

A discussion was had regarding the delivery of information to the PSC. Chair Stenstrom noted that there is a
new Full meeting cadence that will keep the entire Council updated during session. Director Barnes noted that
she will deliver the information in a way that works for the PSC.

Director Barnes continues to meet with Lawmakers.

Engage:

Director Barnes will be meeting with Commissioner Cunningham. MLD was not added to the NBS in Minnesota.

The community has sent a letter to the Commissioner as well. There is a nomination process in April as to which
rare diseases will be on the NBS.

The financial landscape for 2025 will continue to be a challenge.
Director Barnes spoke for Everylife Foundation on the voucher program on a federal level.

Support:

The Medicaid coalition is sending a letter to state representative opposing any cuts to Medicaid. RDAC will sign
this letter.

Monitor:

Nothing to formal to report.

Council members may be called upon to report, testify and support efforts on behalf of RDAC.

Public Comment

Lexie Mohror is a member of the Council and a genetic counselor. She offered gratitude for
the information shared at this meeting.