Our Mission
Our mission is to improve the lives of patients, families and caregivers living with rare disorders.
- Canada is the only industrialized nation not to have a rare disease strategy (CORD).
- Twenty-five percent of children won’t live to see their tenth birthday, (CORD) and those that do will need to transfer to the “adult” system.
- Educational, disability, employment services are not aware or informed about rare diseases (IPSOS).
- Two thirds of families don’t have access to a care coordinator (IPSOS).
- Seventy-four percent of families did not receive emotional or psychological support (IPSOS).
How You Can Help
Our Service LIst
Types Of Care
Wearable Signs
Stand out and show your support! Wear our "I Care for Rare" wearable signs to your doctor's appointments, the grocery store, school, and everywhere you can to raise awareness about the struggles faced by those with rare disorders.
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Senior couples
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Nursing Staff
Templates
Advocacy made easy! Download our letter and social templates and reach out to your networks, Mayor, MP, MPP, and the Premier. Let's work together to drive significant changes in how rare disorders are treated in Ontario.
Inspiration For The World
We are calling all Super heroes to run, walk, push, pedal, hand cycle, swim or tow in this fantastic, all-inclusive family event!
Meat Shots For Hungry
We are calling all Super heroes to run, walk, push, pedal, hand cycle, swim or tow in this fantastic, all-inclusive family event!
Welcome to Best Senior Care Center
Listen To Our Stories
The “I Care for Rare” podcast brings you the true stories of how patients and
families are challenged daily by the strained healthcare system and a lack of
community and educational support.
Listen to the stories—in their own words—of families grappling with the multiple challenges of rare diseases or caring for those who are undiagnosed and living with global development delays.
Through our guests’ often heartbreaking stories of their day-to-day struggles, you’ll get eye-opening look into the shortfalls of the healthcare and community support system, a system that often blocks families from accessing the medical care and assistance they desperately need.
You’ll learn the trials of navigating the gaps in healthcare, education and
community support and hear first-hand how a system meant to help falls
desperately short of its goals, leaving families and caregivers, isolated and
alone, to shoulder the difculties inherent in dealing with rare diseases.
Podcast
Explore the “I Care for Rare” podcast, where we dive into the stories of families navigating healthcare, education, housing, and the unique challenges of rare disorders. Discover firsthand accounts of the healthcare and community support system’s shortcomings and how it impacts these families.
Our Testimonials
What They Say
