EPILEPSY ONTARIO · ADVOCACY
Understanding rights. Removing barriers. Strengthening voices.
People living with epilepsy deserve to be heard, included, and able to access the care and support they need.
Advocacy means speaking up about barriers, challenging misunderstanding, and working towards change—in everyday situations and across the systems that shape our lives.
FOR THE LATEST INFORMATION
Connect with Epilepsy Ontario or your local agency.
For the latest information about advocacy priorities, current campaigns, and ways to get involved, reach out to Epilepsy Ontario or your local epilepsy agency.
FIND YOUR STARTING POINT
Issues that affect everyday life.
Explore information and resources about speaking up for your needs, medication access, rights, and employment.
INFORMATION FOR SELF-ADVOCACY
Understand your options
Explore information about epilepsy, healthcare appointments, employment, disclosure, and practical support. Use it to prepare questions and explain your needs.
MEDICATION ACCESS
Drug shortages
Find the official Canadian shortage-reporting website for published medication shortage and discontinuation reports.
For questions about your own prescription or supply, speak with your pharmacist and prescribing healthcare professional.
RIGHTS & INCLUSION
Discrimination & accommodation
Explore Epilepsy Ontario’s rights resources. For advice about an individual human rights concern, the Human Rights Legal Support Centre is a separate source of legal help.
AT WORK
Epilepsy & employment
Find the employment resource section for people living with epilepsy and employers seeking to build an informed, inclusive workplace.
YOUR EXPERIENCE MATTERS
Advocacy can start with you.
You do not need to be an expert to ask questions, describe a barrier, or explain what would make a difference.
Speak up for your needs
Write down what is happening, what is difficult, and the change or support you are asking for. Bring questions to conversations about your care, education, work, or community participation.
Support someone’s voice
Listen to what matters to the person. Ask how they would like to be supported, respect their choices, and help them communicate their own priorities.
Challenge misunderstanding
Share reliable epilepsy information at school, work, and in your community. Learning about seizures and how to respond can help replace assumptions with understanding.
Help decision-makers understand
Explain how a policy, service gap, or barrier affects everyday life. Describe the practical change you would like to see and how it could improve access or inclusion.
LEARNING FROM LIVED EXPERIENCE
People’s stories help build understanding.
Voices of Epilepsy shares personal experiences, community perspectives, and stories about people living with epilepsy.
ADVOCACY HISTORY & BACKGROUND
Building on earlier work.
The following examples describe past advocacy work. They are included as historical background and are not announcements of upcoming events or current campaign activities. Contact Epilepsy Ontario or your local epilepsy agency for the latest updates.
HISTORICAL INITIATIVE
Epilepsy Action Day at Queen’s Park
Past Epilepsy Action Day initiatives brought epilepsy staff, volunteers, agencies, and advocates to Queen’s Park to share community concerns with provincial decision-makers.
HISTORICAL SUBMISSIONS
Provincial Strategy for Epilepsy Care
Earlier advocacy supported the development of a provincial approach to epilepsy care, including access to specialist services and more consistent care across Ontario.
PAST SUBMISSION · 2022 PROVINCIAL BUDGET
Funding community epilepsy programs
Epilepsy Ontario submitted a request ahead of Ontario’s 2022 provincial budget seeking funding for community epilepsy education and support programs.
This describes that earlier submission. It is not a current call to sign a campaign letter.
UNDERSTANDING THE IMPACT
Research can inform the conversation.
The Canadian Epilepsy Alliance’s 2011 survey explored adults’ experiences of epilepsy across Canada. Visit the survey page for the dated findings and downloadable background material.
SUPPORT IN YOUR COMMUNITY
Find your local epilepsy organization.
Explore the agencies serving Ontario and the education, information, and support available in your area.
This page provides general information, not individual legal or medical advice. Seek qualified advice for your circumstances and check original dates on historical materials.
