Policy Proposal Form - Minnesota Rare Disease Advisory Council

Policy Proposal Form

The Minnesota Rare Disease Advisory Council (MNRDAC) is committed to improving the lives of Minnesotans impacted by rare diseases through thoughtful, community-driven policy.

We invite you to share your policy barriers or solutions with us. Submissions will aid us as we determine our policy priorities. Please provide as much detail as possible so we can fully understand your suggestion.

Submitting this form does not guarantee that the Council will take action.

MNRDAC Scope of Policy Recommendations

MNRDAC will consider recommending policies that improve early diagnosis and
detection for rare diseases, ensure timely access to currently available rare disease
treatments and services, enhance coordination of care for individuals with rare
diseases, and accelerate and advance rare disease research.

Policy options include (but are not limited to) newborn screening, genetic testing,
prior authorization practices, value-based care, and medical research.

MNRDAC will avoid redundant policy development efforts by engaging with Department of Health Services (DHS), Minnesota Department of Health (MDH), and other relevant state agencies.

Organization / Affiliation

Your County of Residence

Your Connection to Rare Diseases

Check all that apply

Patient / living with a rare disease

Family member / caregiver

Healthcare provider

Researcher / scientist

Advocate / nonprofit representative

Government relations professional

Other (please specify)

Other

Please Select Which Topic Your Policy Idea Relates to(Required)

Reduced Time to Diagnosis – MNRDAC will deliberate on topics related to the use of diagnostic tools (genetic testing, newborn screening, etc.) to facilitate early diagnosis.

Coordination of Care – MNRDAC will seek to identify and deliberate on topics that address fragmentation of care in rare disease management.

Acceleration and Advancement of research – MNRDAC will deliberate on topics that increase the ability of the scientific and/or rare disease patient community to address the unique challenges to research for rare diseases.

Other – Please explain your policy idea in detail

Other

Background or Supporting Information

Relevant research, statistics, personal stories, or existing models from other states. You may also attach documents below.

Urgency of the Proposal

Time-sensitive (please explain why)

No specific deadline

Time-sensitive Explaination

Additional Comments or Context

File Upload

Attach supporting documents, letters, or reports.

Drop files here or

Max. file size: 300 MB, Max. files: 10.

Consent Checkbox(Required)

I understand that submitting this form does not guarantee action by the Minnesota Rare Disease Advisory Council.

*If you would like to connect with MNRDAC staff regarding your policy idea, please contact [email protected].