A conversation with the public policy team for the National Organization for Rare Disorders (NORD).
Topics of discussion will include:
- Current federal and state legislative priorities for NORD;
- NORD’s interaction with the Food & Drug Administration, National Institutes of Health and the Center for Medicare & Medicaid Services;
- Status of issues important to the Mito community, including mandated insurance coverage for medical foods, vitamins and supplements used to treat rare diseases and legislation relating to orphan drugs;
- How NORD works with families on legislation, including NORD’s legislative priorities as well as issues families bring to NORD; and
- What patients and families can do to make sure their voices are heard on issues that are important to them.
NORD is a non-profit organization which supports individuals with rare diseases through advocacy, education, research grants and networking among service providers. NORD’s Washington, D.C.-based policy team provides a consistent voice for rare disease patients and families on Capitol Hill and beyond.
Speakers include Martha Rinker JD, VP of Public Policy, Paul Melmeyer, Assistant Director of Public Policy, and Tim Boyd, Associate Director of Public Policy.
