International Rare Disease Day with Wes Michael

In this special episode of I Care for Rare, host Sherrilynne Starkie and Sandra Markus, founder of I Care for Rare, welcome Wes Michael to the show in honour of International Rare Disease Day.

Wes is the founder of Rare Patient Voice, an organization dedicated to ensuring that rare disease patients and their families have the opportunity to share their stories and insights. In this conversation, Wes shares how empowering patients to have their voices heard can lead to better healthcare outcomes, stronger advocacy, and more inclusive research.

“Every patient has a story, and every story has the potential to change how we think about healthcare and support for rare disease communities,” says Wes.

Sandra also reflects on her personal journey as a mother to Zach, whose rare disease remained undiagnosed for 18 years, highlighting the importance of raising awareness and fostering community connections.

This episode highlights the essential work of CORD (Canadian Organization for Rare Disorders) and their "Canada's Rare Disease Strategy," a comprehensive plan with five key action points:

• Improving early detection
• Ensuring timely care
• Enhancing community support
• Providing access to promising therapies
• Promoting innovative research

How You Can Help:

Visit our website to learn how you can advocate for better healthcare support, community resources, and rare disease research.

We Need Your Help

Please help us make healthcare better for people with rare disorders in Ontario! We want to support individuals, families, and caregivers who are dealing with these uncommon health issues. 

Healthcare in Ontario is falling behind. That’s why we're supporting Bill 129 to change the Health Protection and Promotion Act. This law will help put into action the good ideas from the Rare Disease Working Group Report, which was made on March 10, 2017.

Here’s how you can help: 

• Sign MPP Bhutila Karpoche’s petition for an Ontario Rare Disease Strategy.
• Download our letters and send them to your government officials.

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