References

[1] CanadaHelps. 2020. TheGivingReport 2020. Toronto: CanadaHelps.org https://www.canadahelps.org/en/the-giving-report/

[2] Lasby, D. 2020. Sector Monitor: Charities & the COVID-19 Pandemic. Toronto: Imagine Canada https://imaginecanada.ca/sites/default/files/COVID-19%20Sector%20Monitor%20Report%20ENGLISH_0.pdf

[3] The Senate Special Committee on the Charitable Sector. 2019. Catalyst for Change: A Roadmap to a Stronger Charitable Sector. Ottawa: Senate Printing Service https://sencanada.ca/content/sen/committee/421/CSSB/Reports/CSSB_Report_Final_e.pdf

[4] Lasby, D. & Barr, C. 2018. 30 Years of Giving in Canada The Giving Behaviour of Canadians. Toronto/Ottawa: Rideau Hall Foundation and Imagine Canada https://live-imagine-canada.pantheonsite.io/sites/default/files/2019-05/30years_report_en.pdf

[5] Ontario Nonprofit Network. 2019. Sector 360° Survey: Taking the pulse of Ontario’s Nonprofit Sector. Toronto. https://theonn.ca/wp-content/uploads/2019/11/Report.ONN-Sector-360-Survey.FINAL_.November-2019.pdf

[6] CanadaHelps. 2020. TheGivingReport 2020. Toronto: CanadaHelps.org https://www.canadahelps.org/en/the-giving-report/

[7] Canada Revenue Agency. 2019. T1 Final Statistics 2019 edition (for the 2017 tax year). https://www.canada.ca/en/revenue-agency/programs/about-canada-revenue-agency-cra/income-statistics-gst-hst-statistics/t1-final-statistics/2017-tax-year.html

[8] Philanthropic Foundations Canada. 2019. Canadian Foundation Facts. https://pfc.ca/resources/canadian-foundation-facts/

[9] Carter, T.S. & Man, T.L.M. 2016. When Is A Gift Not A Gift? And What To Do When Gifts Go Bad? Toronto/Ottawa. Carters Professional Corporation http://www.carters.ca/pub/seminar/charity/2016/Handout-When-is-a-Gift-Not-a-Gift.pdf

[10] Imagine Canada. Sector Source, Basics of Tax Receipting for Donations. http://sectorsource.ca/managing-organization/gifts-and-receipting/receipting

[11] Canada Revenue Agency. 2012. Fundraising by registered charities CG-013. https://www.canada.ca/en/revenue-agency/services/charities-giving/charities/policies-guidance/fundraising-registered-charities-guidance.html

[12] Haggar-Guenette, Cynthia, Yu, Mingyu. 2009. Satellite Account of Nonprofit Institutions and Volunteering : 2007, (Catalogue no. 13-015-X, ISSN 1710-9264). Ottawa. Statistics Canada.  https://www150.statcan.gc.ca/n1/pub/13-015-x/13-015-x2009000-eng.pdf

[13] Canada Revenue Agency. 2012. Fundraising by registered charities CG-013. https://www.canada.ca/en/revenue-agency/services/charities-giving/charities/policies-guidance/fundraising-registered-charities-guidance.html

[14] CBC News. September 22 2010. Charities paid $762M to private fundraisers. https://www.cbc.ca/news/canada/charities-paid-762m-to-private-fundraisers-1.916829

[15] Association of Medical Research Charities (AMRC). 2017. Making a difference: Impact report 2017. https://www.amrc.org.uk/making-a-difference

[16] Van de Bovenkamp HM, Trappenburg MJ. Government influence on patient organizations. Health Care Anal. 2011;19(4):329-351. doi:10.1007/s10728-010-0155-7

[17] Souliotis K, Agapidaki E, Peppou LE, et al. Assessing patient organization participation in health policy: a comparative study in France and Italy. Int J Health Policy Manag. 2018;7(1):48–58. doi:10.15171/ijhpm.2017.44

[18] Dorota Sienkiewicz, D., Van Lingen, C. 2017. The Added Value of Patient Organisations, Brussels. European Patients Forum  https://www.eu-patient.eu/globalassets/library/publications/epf_added_value_report_final.pdf

[19] Berglas, S., Jutai, L., MacKean, G. et al. Patients’ perspectives can be integrated in health technology assessments: an exploratory analysis of CADTH Common Drug Review. Res Involv Engagem 2, 21 (2016). https://doi.org/10.1186/s40900-016-0036-9

[20] Canada Revenue Agency. 2019. Public policy dialogue and development activities by charities CG-027. https://www.canada.ca/en/revenue-agency/services/charities-giving/charities/policies-guidance/public-policy-dialogue-development-activities.html#toc4

[21] Broder, P. 2019. Charities’ Political Activities Question Quieted, If Not Fully Resolved. LawNow. https://www.lawnow.org/charities-political-activities-question-quieted-if-not-fully-resolved/

[22] HealthPartners. 2020. The Impact of COVID-19 on Our Most Vulnerable Canadians. Ottawa. https://healthpartners.ca/sites/default/files/COVID-19-Impact-Report-En-20200507.pdf

[23] CAF America. 2020. The Voice of Charities Facing COVID-19 Worldwide. https://www.cafamerica.org/wp-content/uploads/3_CV19_Report_6_10.pdf

[24] Health Charities Coalition of Canada. 2020. Emergency Funding to Support Life-Changing Health Research. Ottawa. http://www.healthcharities.ca/news-and-events/emergency-funding-to-support-life-changing-health-research-(1).aspx

[25] Jensen, E. 2020. Sector Stories: Revenue Loss Threatens Survival of Charities And Nonprofits. Toronto: Imagine Canada https://imaginecanada.ca/en/360/sector-stories-1

[26] Health Charities Coalition of Canada. 2020. With revenue cut in half and staff layoffs, health charities concerned about patient care. Ottawa. http://www.healthcharities.ca/news-and-events/with-revenue-cut-in-half-and-staff-layoffs,-health-charities-concerned-about-patient-care.aspx

[27] Lasby, D. 2020. Sector Monitor: Charities & the COVID-19 Pandemic. Toronto: Imagine Canada https://imaginecanada.ca/sites/default/files/COVID-19%20Sector%20Monitor%20Report%20ENGLISH_0.pdf

[28] CBC News. July 16, 2020. Health charities in Canada hit with historic loss in revenue during COVID-19. https://www.cbc.ca/news/health/health-charities-1.5651328?__vfz=medium%3Dsharebar

[29] Canada Revenue Agency. What is the difference between a registered charity and a non-profit organization? https://www.canada.ca/en/revenue-agency/services/charities-giving/giving-charity-information-donors/about-registered-charities/what-difference-between-a-registered-charity-a-non-profit-organization.html

[30] Canada Revenue Agency. Program areas and field codes.  https://www.canada.ca/en/revenue-agency/services/charities-giving/charities/operating-a-registered-charity/program-areas-field-codes.html

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