Appendix C: Disease specific non-profit groups without charitable registration

  • Acne and Rosacea Society of Canada
  • Action Hepatitis Canada
  • ACTION Ontario for People with Neuropathic Pain
  • aHUS Canada
  • Alberta Community Council on HIV
  • Alberta Society of Melanoma
  • Alliance for Open Access to Psychiatric Medications
  • Arthritis Consumer Experts
  • Be the Choice
  • Bladder Health BC 
  • Canadian Arthritis Patient Alliance
  • Canadian Association of Pompe (CAP) 
  • Canadian Association of Psoriasis Patients (CAPP)
  • Canadian Association of Scarring Alopecias
  • Canadian Burn Survivors Community
  • Canadian Cystic Fibrosis Treatment Society 
  • Canadian MPN Network
  • Canadian Pituitary Tumours & Related Diseases Network (PTN)
  • Canadian PKU & Allied Disorders Inc.
  • Canadian Psoriasis Network
  • Canadian Skin Patient Alliance
  • Canadian Spondylitis Association
  • Canadian Treatment Action Council 
  • Canadian Women with Fibroids
  • Centre for ADHD Awareness Canada (CADDAC)
  • Chronic Lymphocytic Leukemia Patient Advocacy Group
  • Chronic Myelogenous Leukemia Society of Canada
  • CLLSLL at Groups.io
  • Consumer Advocare Network
  • COPD Canada
  • Dense Breasts Canada
  • Familial Hypercholesterolemia Patient Network
  • Fibromyalgia Society Of Edmonton & Area
  • HAE Canada Inc.
  • HS Aware
  • International Federation of Aging
  • Life Saving Therapies Network
  • Metastatic Breast Cancer Atlantic
  • Millions Missing Canada
  • Olive Us Care
  • Pacific Hepatitis C Network
  • Prevent Cancer Now
  • The Canadian CML Network
  • Wounds Canada
  • Coalition Priorité Cancer au Québec / Quebec Cancer Coalition
  • Canadian Psychedelic Association

State of Patient Associations in Canada

  1. Executive Summary
  2. Introduction
  3. Revenue
  4. Fundraising
  5. Expenses
  6. Human Resources
  7. Public Policy Activity
  8. Post-COVID Implications
  9. How Patient-Focused Charities Describe Themselves
  10. Appendix A: Organizations reporting public policy dialogue and development activities
  11. Appendix B: Spending on Public Policy activities of every reporting organization
  12. Appendix C: Disease specific non-profit groups without charitable registration
  13. Appendix D: The differences between a registered charity and a non-profit organization
  14. Appendix E: Program areas and field codes
  15. Appendix F: Patient-Focused charities included in the report
  16. References
  17. Data