RDACs Resources

This page includes draft policy information that is still in development. You are welcome to use these materials, but please keep in mind that they may be incomplete or subject to change.

We welcome suggestions and additional resources. To share materials or feedback, please contact anna@statezebranetwork.org  

Rare Disease Advisory Councils

A Rare Disease Advisory Council is a state-appointed group that brings together patients, experts, and policymakers to advise on rare disease needs and recommend actions to improve care, access, and support.

Party Pro / Cons and Concerns

Important Note: Remember, there are nuances that differentiate in each state. This material provides general information that can be adapted to truly align to your own state.

Democrat Party Pros
Arguments Supporting RDAC Creation
Democrat Party Pros
Democrats • RDACs elevate patient voices and improve understanding of rare disease needs across health agencies. • Support for councils that prioritize equity, early diagnosis, and access to treatment. • Encourages data collection to identify disparities and gaps in rare disease care.
Democrat Party Cons/Concerns
Arguments Against RDAC Creation
Democrat Party Cons/Concerns
• Concerns that RDACs without funding or authority may produce recommendations that states fail to implement. • Worries that councils may highlight systemic inequalities without providing states the resources to address them. • Desire for strong patient protections in any data-sharing or policy proposals.
Republican Party Pros
Arguments Supporting RDAC Creation
Republican Party Pros
• RDACs provide structured, state-led insight into rare disease issues without imposing mandates. • Seen as a low-cost, advisory approach that improves policymaker understanding of rare conditions. • Supports councils that streamline bureaucracy and help families navigate complex systems.
Republican Party Cons/Concerns
Arguments Against RDAC Creation
Republican Party Cons/Concerns
• Concern about creating new advisory bodies that could expand over time or lead to new mandates. • Skepticism toward recommendations that may increase state spending or require coverage expansions. • Caution about data-sharing or regulatory proposals that may emerge from RDAC recommendations.
Download pDF
RDAC photo
From the Patient Perspective

RDACs are invaluable because they give rare disease patients and families a direct voice in shaping state policies that affect diagnosis, treatment, and access to care. Patients appreciate that RDACs bring together experts, policymakers, and advocates to identify gaps and improve systems that are often confusing and fragmented. At the same time, families worry that without dedicated funding or authority, RDAC recommendations may not lead to real changes, leaving their needs heard but not met.

Talking Points to Empower and Fund Rare Disease Advisory Councils (RDACs)
  • Provide stable funding and formal authority for RDACs to shape policy.
  • Require state agencies to respond to or consult with  RDAC recommendations.
  • Include strong patient, caregiver, and clinical representation.
  • Task RDACs with reviewing impacts of major federal proposals on rare disease patients.
  • Promote cross-agency collaboration (Medicaid, public health, insurance regulators, NBS).

 

Policy Guidelines
  1. Ensure RDACs have formal authority to influence policy—not just advisory status.
    With major federal reforms pending, states need empowered RDACs that can meaningfully evaluate how proposed changes to Medicaid, insurance rules, drug pricing, or eligibility will impact rare disease patients.

 

  1. Provide stable state funding for RDAC operations.
    If federal changes tighten budgets or shift responsibilities to states, unfunded or volunteer-only RDACs risk being sidelined. Dedicated funding ensures continuity, staffing, research capacity, and implementation of recommendations.

 

  1. Include robust patient and caregiver representation.
    As sweeping reforms may alter disability rules, coverage standards, or affordability protections, RDACs must include individuals with lived experience to accurately assess the impact on medically fragile communities.

 

  1. Require agencies to formally respond to RDAC recommendations.
    Without mandated follow-up, RDAC guidance may be ignored—especially during large-scale federal reforms. States should require agencies to review, respond to, and act upon RDAC proposals.

 

  1. Empower RDACs to review impacts of federal and state policy changes on rare disease patients.
    RDACs should be tasked with evaluating how reforms to Medicaid funding, insurance markets, PDAB actions, NBS, or genetic testing access may affect diagnosis, treatment, and long-term care.

 

  1. Strengthen data collection to track gaps in access and outcomes.
    If federal reforms alter reporting or oversight requirements, states should rely on RDACs to gather real-world patient data to inform policy decisions and avoid unintended harm.

 

  1. Require cross-agency collaboration.
    RDACs should have formal engagement pathways with Medicaid, public health agencies, insurance regulators, and NBS programs to coordinate responses to policy shifts that affect rare disease care.

 

  1. Ensure RDAC expertise includes genetics, NBS, advanced therapies, and high-cost treatment access.
    Broad federal reforms may reshape coverage for gene therapy, diagnostics, and specialty drugs. RDACs must have specialists capable of assessing these areas accurately.

 

  1. Mandate transparency through annual reports and public updates.
    In a changing policy environment, states need clear, accessible RDAC reporting to inform legislators, agencies, and families about emerging risks and recommendations.

 

  1. Require culturally competent and equitable policy assessments.
    As major reforms could widen disparities, RDACs must review impacts on underserved communities, rural families, and those facing socioeconomic barriers to rare disease care.



Additional Resources

Organizations and leaders who have policy experience in this area

1-Pagers

NORD – RDAC 1-Pager

Videos & Podcasts