State of Patient Associations in Canada

Who do people turn to for support when they are diagnosed with a chronic or terminal illness? Typically, they are referred to a disease specific charity committed to supporting people with a variety of programs ranging from basic medical information to how to navigate the health care system.

These charities also raise money for research, advocate for change in health care policy, operate social enterprises that provide employment, and conduct peer support programs that help people manage their condition.

This report takes a unique analytical look at these charities. By analyzing the public information returns these charities submit to Canada Revenue Agency, we have been able to capture a moment in time, just pre-COVID, that provides a clear picture of the financial, operational, and human resource capacity of these organizations.

Be ready to have some widely held perceptions challenged by the data.

Charitable organizations included in this report are defined as:

Social purpose organizations that exclusively provide services, support, education, research, and/or advocacy to patients, caregivers and families in crisis or need, marginalized populations, at-risk and complex care needs, disabilities and those suffering from acute or chronic health challenges.