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Resources and Links

Global Patient Organizations

  • Canadian Organization for Rare Disorders (CORD)
  • Regroupement québécois des maladies orphelines (RQMO)
  • Institute for Optimizing Health Outcomes
  • Fabry International Network
  • Fabrazyme.com
  • Discover Fabry
  • Fabry (FSIG) – USA
  • Fabry (NFDF) – USA
  • Fabry Australia
  • Lysosomal Disease Network (LDA)
  • Fabry – England (MPS Society)
  • Global Organization for Lysosomal Diseases (GOLD)
  • Association des Patients de la Maladie de Fabry (APMF) – France
  • Fabry Patient Group – Norway
  • Fabry Support & Informatie Groep Nederland
  • Fabry Suisse
  • Morbus Fabry – Germany
  • Lysosomal Storage Disorders – France

 

Medical Information

  • Treatment Comparison Tool
  • Fabry Disease informational video
  • Teacher’s Guide
  • BioMed Central – Fabry Research Article
  • Mount Sinai School of Medicine – Fabry
  • National Center for Biotechnology Information – Fabry
  • Fabry Registry
  • U of T – Medical Biophysics – Professor Jeffrey A. Medin – Fabry
  • The National Institute of Neurological Disorders and Stroke (NINDS) – Fabry
  • National Institutes of Health (NIH)
  • National Organization for Rare Disorders
  • Clinicaltrials.gov
  • Pharmacologic Chaperone Responsiveness in Canadian Patients with Fabry Disease
  • Galafold Product Monograph (March 26 2019)
  • Melinda Krynen Hill, Registered Psychotherapist, RP, MEd, MPH
  • https://www.fabrydisease.ca

Additional reading:

Spice It Up magazine (FRANÇAIS)
Résilience with Michel Sévigny

 

The Canadian Fabry Association (CFA) is committed to improving the lives of those who live with and are affected by Fabry disease in Canada.

Registration number 827560871RR0001

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