Background

At the time of the 2019 Garrod mtg Dr Andreas Schulze, President of the Garrod Association, expressed his support for the development of this Committee to provide more input to the Executive in matters related to public policy and to represent a strong voice for patient support organizations. It was suggested that the L and R committee could function as a “face” of the Garrod representing the patients and their families with IEMs. It was proposed that the L and R committee could liaise with patient organizations, could work with provincial drug plans and be recognized as the “go-between” between support groups and Industry. It was proposed that eventually this committee could evolve into a Standing Committee that is easily accessible, provides information to government and other bodies requesting information regarding drug coverage and overall help people navigate the “system”.

 

Terms of Reference

Meeting Details

Occurrence- Minimum of four times per year, virtually, with one meeting in person in conjunction with the Garrod Association annual meeting. Members are expected to attend at least 3 meetings per year (75% attendance)
Time: TBD
Chair: Dr. Cheryl Rockman-Greenberg (current)

Accountability

Reporting to the President, Garrod Association and the Garrod Executive

Mandate & Objectives

• Act in an advisory capacity to the Executive of the Garrod Association of Canada on matters of public policy that impact our patients and their families with IEM
• Be a voice nationally for the Garrod Association on IEM matters of public policy that impact our patients and their families
• Liaise directly with Guideline committee on matters of mutual interest.
• Provide input to the Garrod Executive on matters related to interaction with Industry and with patient-support organizations

Committee Member Responsibilities

The committee will consist of representatives from various jurisdictions across Canada. All members will be responsible for the following:

• Actively participate in meetings to achieve objectives.
• Attend at least 75% of meetings (either in person or virtually).
• Review and appraise documents sent out to members in a timely manner.
• Communicate important updates to designated area/department where applicable.

Membership

5 year term renewable once

Reporting

The Committee will compile the information either as a resource that is curated and updated continuously or via publication. The Committee Chair will report annually to the Garrod Association Members during the Association’s Annual Meeting.