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Out of every five Canadians aged 20 and older, four are at risk of developing a chronic condition, according to Government of Canada statistics. In addition, it is estimated that 1 in 12 Canadians is affected by a rare disease or disorder—most of which are life-threatening or severely debilitating.

There are over 7,000 known rare diseases, impacting approximately 350 million people globally. Collectively, rare diseases affect more individuals than AIDS and cancer combined. More than 50% of those affected are children, and tragically, 30% of children with a rare disease will not live to see their fifth birthday.

We are committed to supporting individuals and families affected by a wide range of conditions, including Ehlers-Danlos Syndrome (EDS), arthritis, epilepsy, cancer, LAM, autism, familial ataxias, neurofibromatosis (NF), and more—ensuring no one suffers in silence.

Living with a chronic or rare condition does not have to define a person’s life. We empower individuals to rebuild, reconnect, and actively participate in their communities. By bridging the gap of isolation and misunderstanding that often follows diagnosis, we provide meaningful support through education, workshops, seminars, and access to critical resources.

Chronic diseases—including diabetes, cancer, arthritis, mental health conditions, cardiovascular disease, and chronic respiratory illnesses—are leading contributors to reduced quality of life, increased hospitalizations, rising healthcare costs, and premature death in Canada. Those we serve often face significant challenges, including misdiagnosis, unnecessary procedures, limited treatment options, financial hardship, and lack of coordinated support.

Our vision is a world where no one faces illness alone—where individuals are supported, empowered, and equipped not just to survive, but to live fully, participate in their communities, and achieve their best possible health.

The Carion Fenn Foundation was founded by Carion Fenn, an award-winning advocate for inclusiveness, accessibility, and patient-centred care. She serves as President & CEO of the Foundation and is the host of Health 180 with Carion Fenn on Rogers TV Durham.

Carion brings extensive leadership experience across the healthcare system. She is a former Trustee at Lakeridge Health, where she also served as Board Quality Committee Chair and Co-Chair of the Ajax Pickering Hospital Community Panel, contributing to governance across five hospitals, two mental health organizations, and a long-term care facility serving a region of over 650,000 residents. In her role as Quality Committee Chair, Carion played a key leadership role in supporting Lakeridge Health through the COVID-19 pandemic, with oversight focused on maintaining quality, safety, and patient-centred care during a critical period. She has also served as Accessibility Advisor to the Town of Ajax Council and as Vice Chair of the Accessibility Advisory Committee.

The Foundation partners with organizations including the Pickering Public Library, V!VA Whitby Shores Retirement Community, Freedom City Ministry, LiveWell Pathway Healthcare Services, 100 Accomplished Black Canadian Women, Women’s Multicultural Resource and Counselling Centre of Durham, Black Action Defence Committee Inc., Ontario Shores Centre for Mental Health Sciences, Lakeridge Health, and AjaxPickering.ca.
 

We advocate and raise awareness through flag raisings, municipal proclamations (Town of Ajax, City of Pickering and many more), television interviews (Rogers TV), Newspapers (Snapd, News Advertisers), Bowl for Rare Disease Fundraiser, and a Karaoke Fundraisers.   In recognition of International Mental Health Day, we host a Mental Health Forum, in partnership with Ajax Public Library working with various community organizations such as Lakeridge Health, Ontario Shores, Durham Mental Health Association, Canadian Mental Health Association Durham, Sankat Mochan Temple and more.   

In recognition of Mental Health Awareness Week, we host a Mental Health Symposium in partnership with Ajax Public Library and we recently launched our Resilience Workshop in partnership with Clarington Public Library, Ajax Legion and Lakeridge Health, and Sponsored by Township of Clarington and the Islamic Society of Ajax.