Canadian Patient group Leaders Meet to Review Strategy and 2013 Agenda

Cara Hesse | November 27, 2012

Advocacy leaders from four lysosomal storage disorder groups in Canada gathered in Vancouver to discuss 2013 priorities and future collaboration. The timing of the meeting couldn’t have been better – just a week earlier the Canadian Government announced two new major initiatives in support of rare diseases. One initiative involves establishing a new framework to support the development and authorization of drugs for rare diseases and the other involves creating a new web portal called Orphanet-Canada that will assist patients in finding the information and services they need. The rare disease community in Canada applauded the announcement, saying that it will bring new hope to people with rare diseases.

Genzyme Canada hosted leaders from the Gaucher Foundation of Canada, Canadian Fabry Association, Canadian Association of Pompe, and the Canadian MPS Society. “There are new faces in the LSD space in Canada and I think the meeting helped to facilitate important connections in the community. Though each community is unique, I think several participants were surprised at how much they all had in common,” said Blaine MacNeil, National Sales Manager, Genetic Diseases, Genzyme Canada. In reviewing their accomplishments of 2012, all four organizations reported hosting their largest and most successful family conferences ever. Discussion topics included board development, fundraising, and improving the effectiveness and impact of family conferences.

Pictured from left to right: Kirsten Harkins, Tony Reynolds, Christine White, Emma Rooney, Bernie Geiss, Darren Bidulka, John Dyck, and Brad Crittenden.

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