Canadian Fabry Association

From WikiGenetics

Contents 1 Background 2 Objectives 3 Website 4 Recommended Sites 5 Links to Other Organizations

[edit] Background

A group of Fabry patients in Canada gathered to advocate for access to and reimbursement of enzyme replacement therapy grew into the Canadian Fabry Association, which is still advocating and changing policy to improve the outcome for individuals affected by this lysosomal storage disorder. Through the Fabry International Network, they are in contact with Fabry organizations, patients and experts worldwide.

[edit] Objectives

a) about Fabry disease and the available treatments for Fabry disease;

b) to initiate, encourage and support research and investigation into the causes and treatment of Fabry disease and to provide funds in respect thereof;

c) to promote the better understanding, management and treatment of Fabry disease; and

d) to arrange for, co-ordinate and increase the facilities available for diagnosis, consultation and treatment of those suffering from Fabry disease.

[edit] Website

http://www.fabrycanada.com/

[edit] Recommended Sites

[edit] Links to Other Organizations

   * Advocacy Organizations
   * Academic Institutions
   * Biotech Companies
   * Government Agencies
   * Genetic Alliance
   * Laboratories
   * Law/Consulting Firm
   * Patient Registries
   * Policy Organizations/Think Tanks
   * Professional Societies
   * Other