Introducing our speakers
speech abstract
One family’s perspective
Not only speaking from a personal and family perspective, John Forman will call on his experience in working with the NZ Organisation for Rare Disorders, spokesperson for the Access to Medicines Coalition and Chairperson of the NZ Carers Alliance.
biography
John’s paid role is Executive Director of the New Zealand Organisation for Rare Disorders and he has long involvement as a volunteer and as a paid worker in disability services and related advocacy agencies. His prime objective is improved information, clinical services, research, and policy responses for rare disorders. His main method of achieving this is through leadership and active involvement in several advocacy and service improvement networks in the health and disability sector - working with other groups to identify and organise around their common interests. John is on the Board of several local and international rare disease and advocacy organisations, one statutory advisory committee (ACART) and the Ministry of Health’s Newborn Metabolic Screening advisory committee.
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