Who We Are

The Foundation was born after our CEO, Audry, went through three years of medical gaslighting from doctors that wouldn't recognize her symptoms and diseases.
After seeing around 20 doctors in Canada, it was by the end of March 2023, when she met a Geneticist who confirmed the diagnosis of her diseases: Syringomyelia, Klippel-Feil Syndrome and Tethered Cord Syndrome.

While navigating the universe of rare diseases, searching for information and learning how there are so many people who have no idea of ​​the difficulties that these patients have to face, Audry understood that her life's mission had changed. Now she was called to help others who may not be as fortunate as her because they don't even have a diagnosis or have been misdiagnosed.

The Foundation is officially registered with the Canadian federal government and the Province of Alberta.

Vision

Our purpose is based on two pillars:

Provide support to rare disease patients by promoting education, donations, clinical trials, patient registries, and genetic testing for accurate diagnosis.

Raise awareness and recognition of the physical, mental, financial and social challenges faced by rare disease patients.

Mission

Help rare disease patients that can’t afford the cost of genetic testing in order to find a diagnosis.

Educate rare disease patients on how to cope with their condition by promoting personal experiences and testimonies through social media, website, books, movies, among others.

Provide a platform for available resources, patient registries and support.

Promote all information related to medical advancement, clinical trials and drug development.

Create awareness on the importance of organs, tissue and body donation for education and advancement of medical science.

What We Do

Introducing our new non-profit branch

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CANADIAN SYRINGOMYELIA NETWORK

Rare patients are compared with zebras