NORD Public Policy Team

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.

Attachments:

NORD Supported Legislation 2016 RDD.pdf
NORD State Legislative Priorities 2016.pdf

About The Speaker:

Martha Rinker JD is NORD’s Vice President of Public Policy leading the public policy team on matters affecting the rare disease community. Martha is responsible for all Federal and State legislative and regulatory issues and the development and implementation of advocacy strategy and relationships with key stakeholders. Prior to joining NORD, Ms. Rinker was the Chief Advocacy Officer for the American Association of Diabetes Educators (AADE), the Legislative Counsel and Senior Director of Policy, Practice and Advocacy for the American Podiatric Medical Association (APMA) and the Director of Government Relations for the American Orthotic and Prosthetic Association (AOPA).  In addition, Ms. Rinker was the Legislative Director for Congresswoman (now Senator) Barbara Mikulski of Maryland and held staff positions with both the Pennsylvania Senate and the Maryland General Assembly.

Paul Melmeyer currently serves as the Assistant Director of Public Policy at the National Organization for Rare Disorders. In this role, Paul leads the Federal policy operations in developing and advocating for the enactment and implementation of pro-rare disease patient policy.  Prior to joining NORD, Paul held positions with the Center for American Progress, AARP and Senator Bob Casey (D-PA).

Tim Boyd currently serves as the Associate Director of Public Policy at the National Organization for Rare Disorders. In this role, Tim leads the State policy operations in developing and advocating for the enactment and implementation of pro-rare disease patient policy. Prior to joining NORD, Tim was the Director of Domestic Policy at AIDS Healthcare Foundation where he was responsible for the development and execution of domestic policy and advocacy initiatives, including initiatives pertaining to AIDS services, drug pricing, and regulatory issues.

Date: 03/04/2016
Listen Now: Click Here