Inspire. Educate. Change.
Making a Difference for Those Impacted by Rare Diseases
Photo credit: GoFast Photography
Who We Are
A Not-for-Profit Organization
Driven Living is a Canadian incorporated not-for-profit organization that is harnessing the power and popularity of motorsport to raise awareness and funds for rare diseases.
Mission
To inspire individuals impacted by rare disease to live every day to the fullest, as well as raise awareness and funds for care, treatment and research.
Vision
To create a community that inspires hope in those living with rare diseases and to drive change within the healthcare system to better support these patients and their care givers.
Core Values
Trust
We will maintain honesty, integrity and accountability in all that we do. Transparency, solid governance, and
stewardship are part of our DNA.
Inspire
For those living with rare diseases, and their care givers, we want to inspire positivity and hope, as well as finding joy, wherever that may be. We’ll achieve this by leading by example; demonstrating resilience and perseverance, especially when times are tough.
Community
Rare diseases can be isolating. By building a community that connects existing patients and parent advocacy groups, we want to reduce the feelings of isolation. Gathering our collective voices will help raise awareness and drive change. There is strength in numbers; we are rare, but not alone!
Educate
We will share our learnings and resources within our community to empower patients and their advocates. We will also strive to go beyond our community to health professionals, media outlets, the general public, and policy makers to raise awareness and drive change.
Why We Are
For individuals living with a rare disease and those that support them, it is an incredibly frightening and isolating experience. Not only are they dealing with the aspects of having a life-threatening, debilitating, serious or chronic conditions, they are more likely to face:
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Misdiagnosis or difficulty in obtaining an accurate diagnosis, which can be critical for stopping or slowing disease progression
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Limited treatment options, if any
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Difficulty finding physicians or treatment centres with experience for a particular disease, and sometimes finding a physician that believes the symptoms
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Little or no research being done on the disease
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Paying for treatments that are generally more expensive than those for common diseases
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Coverage under public healthcare and reimbursement issues related to private insurance
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Difficulty accessing medical, social, or financial services or assistance because those making the decisions are not familiar with the disease
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Feelings of having been abandoned by our health care system
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Despite the name, rare diseases are not rare if taken together as a group. While the medical conditions may differ wildly, these individuals are enduring the same grief, confusion, frustration, uncertainty, and fear.
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1 in 12 Canadians are affected by a rare disease
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1
2/3 of rare disease patients are children of which 25% will not live to see their 10th birthday
95%
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of rare diseases do not have an approved treatment drug
4.8 years
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the average time it takes for rare disease patients to receive an accurate diagnosis
80%
of rare diseases are caused by a genetic mutation
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There are more than
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known rare diseases
1
7,000
The Statistics
What We Do
Our Partners
Thank You to Those Who Help Make It All Possible
