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The Face of Rare Diseases

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Canada Drives donates $6000 to Rare Disease Foundation

Canada Drives, a Vancouver-based business that helps people across Canada find auto-financing programs, announced today the launch of their innovative community outreach program with a donation of…

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January 2015 marks a new chapter for the Rare Disease Foundation with the hiring of our inaugural Executive Director, David Cox. David's addition will allow the Rare Disea…

The Rare Disease Foundation is very excited to announce that David Cox is joining our team as our inaugural Executive Director, effective January 5, 2015.

David is a CPA, CGA, MBA and came…

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2014 saw the continuation of an amazing partnership between the Rare Disease Foundation, UBC Recreation, and the BC Children's Hospital Foundation. This year the combined …

On November 20th the UBC student community and the rare disease community came together to make a change in the world of rare disease care. After weeks of fundraising, participants could…
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Help our Rare Disease Community Start an Evolution! Check out this UBC campaign and vote for the Rare Disease Foundation. It take less than a minute to register - your vote he…

What is the project? UBC's Start an Evolution is a fundraising and alumni engagement campaign.  By reaching out to the broad UBC community, this campaign aims to connect alumni with ongoing…

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Parent Sasa Drover from Rare Finds 2014 on why we need to be tomorrow's heroes for rare disease families.

(full size version here)

 

OfflinePhoto of Bill McKellin
January 28, 2015

UBC Trek Magazine - An Uncommon Denominator

Bill McKellin

An Uncommon Denominator

TREK - UBC Alumni Magazine

A History of the Rare Disease Foundation
The Rare Disease Foundation is using a collective approach to create a support network for minority patients and a stronger lobby for more research dollars and practical assistance.

By Chris Cannon

The Rare Disease Foundation is using a collective approach to create a support network for minority patients and a stronger lobby for more research dollars and practical assistance.

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By Chris Cannon

It seems odd to describe a medical issue that affects 1 in 12 Canadians as "rare." But taken collectively, the hodgepodge of roughly 7,000 conditions that fall under the rubric of "rare diseases" affects more than three million Canadians - and these are just the known cases. Considering it takes…

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OfflinePhoto of Isabel Jordan
September 29, 2014

Rare Disease Foundation looking for an Executive Director

Isabel Jordan

We're growing fast and we're looking for a dynamic individual who will take responsibility for the leadership and management of the organization as we expands parent resource networks in additional communities across North America and strengthens our relationships with other rare disease communities nationally and internationally.

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Executive Director Position Summary

The Rare Disease Foundation seeks a dynamic individual who will take responsibility for the leadership and management of the organization as it expands parent resource networks in additional communities across North America and strengthens its relationships with other rare disease communities nationally and internationally. In addition to administrative and financial management, the Executive Director ("ED") will spearhead fundraising and expansion.…

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The Power of Community

Parents don't know where to turn when faced with a diagnosis of a very rare or unique condition. If a relevant disease-based organization exists, it may be national or international in scope and other affected families may live far away. The Rare Disease Foundation can help at a local day-to-day level. Our parents have found that they have much to offer each other, regardless of diagnosis.

-A Rare Disease Foundation Parent
  

1 in 12 (or 1 in 10)

The statistic of 1 in 12 (or 1 in 10) people being affected with a rare disease is often quoted but its basis is rarely explained. We believe the actual chance of someone being affected with a rare disease in their lifetime (called lifetime prevalence) cannot be determined as there are not enough people trained to diagnose rare diseases and some conditions are either too severe to be compatible with life or are quite mild so are missed. There are also a large number of rare diseases waiting to be described so any estimate is likely to be an underestimate. One could even say every disease is rare because the genome, environment and lived experience of each patient form a unique constellation. With these caveats in mind, we calculate the lifetime prevalence of rare diseases at between 1 in 12 and 1 in 13 by:

1. Summing the prevalences of the 500 most common rare diseases on the Orphanet prevalence report
2. Removing all birth defects from the list.
3. Adding the prevalence of major birth defects and intellectual disability in the population (5%, range for this estimate is 2.3% to 6%).
 
Many people tell us they do not think that 1 out of every 12 people they know has a rare disease. We believe our estimate does not match common experience because a lot of children with rare diseases do not survive and because a lot of people who have rare diseases look completely normal to the outside observer.            MP/2014

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