Prolonged fevers, rashes, chronic inflammation, joint pain and swelling, and chronic fatigue; these are just a few of the symptoms that can affect patients living with rare autoinflammatory conditions. Some of these diseases occur soon after birth and can develop serious, life-altering organ complications or be fatal if diagnosis and treatment are delayed or unavailable.

Having only been classified in 2007, autoinflammatory diseases are a set of genetic diseases that affect the innate parts of the immune system (making it unique from autoimmune). As a category, autoinflammatory diseases affect thousands of individuals in Canada, but – with varying specific diagnoses – these people have few advocates supporting their health journey.

Patients with these rare rheumatic conditions are often referred to several specialists before a correct diagnosis is made, and this delay in clinical care can often negatively affect their health.

About the Canadian Autoinflammatory Network – Réseau Auto-inflammatoire Canadien

Incorporated in 2022 by a group of patient families – some with multiple family members affected by these diseases – the Canadian Autoinflammatory Network is a not-for-profit dedicated to supporting people living with autoinflammatory diseases in Canada. A network of patients, families, experts, researchers, and health care teams, the Canadian Autoinflammatory Network (Réseau Auto-inflammatoire Canadien) supports autoinflammatory patients by advocating on their behalf with government, pharmaceutical companies, and the Canadian medical landscape for research, policy, and improved diagnostic and treatment outcomes.

In a world where information and support is limited and difficult to find, patients are left spending hours searching the web for research articles and community. Patients find themselves educating the community and their supports and often also educating general health care teams about their disease, with more knowledge than their physicians, which adds to the burden of their already-challenging diagnosis.

We are overdue to change this narrative. Advocacy, awareness, and better education of these diseases for healthcare teams and the overall community needed to become a priority and a dedicated Canadian not-for-profit is one way we can shape those conversations. Patients and families at any age and stage in their experience need a community where they can connect with others, learn more, get supports, give back, and become advocates too.

We are honoured to pursue change and access to better care for autoinflammatory patients in Canada and as we continue to grow so will our voices.

For more information on who we are, please check out our website at www.autoinflammatory.ca

With our sincerest gratitude to the Canadian Arthritis Patient Alliance (CAPA) for promoting us

Written by; Chris Kinchlea – President, Canadian Autoinflammatory Network/ Réseau Auto-inflammatoire Canadien