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Medical research is offering new hope to more than half a million kids who suffer from rare genetic diseases. Our provincial governments need to step up to the plate and make …

Rare Disease Foundation - Genetic Testing Petition from Rare Disease Foundation on Vimeo.

From Dr. Millan Patel, one of our founding members and our Director of Research:

Dear Caring Canadians,

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The Rare Disease Foundation announces a new partnership with the R. Howard Webster Foundation (Montreal) to increase capacity for funding microgrant research over the next fou…

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Research Grants for Rare Disease Research Available from National Organization for Rare Disorders (NORD)

NORD’s 2015 research grant funding is available for study of:

  • Alveolar Capillary Dysplasia – One (1) grant of up to $50,000, for scientific research studies and/or clinical research studies…
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The Face of Rare Diseases

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July 27, 2015

Rare Disease Foundation supports Victoria families

Isabel Jordan

The Rare Disease Foundation supports families throughout Canada who have a child diagnosed with a rare disease..
By Vee Cooper
July 19th 2015
Chek News Victoria

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The Vancouver chapter has more than 200 families on their mailing list, but for families on Vancouver Island that used to mean a trip to the mainland to join a parent support group.

But not anymore.

The Victoria Parent-2-Parent Resource Network is entering its third year.

It’s an opportunity for parents of children with rare diseases to meet, and simply talk with each other.

“Sometimes we laugh, sometimes we cry, sometimes we complain, and sometimes we’re joyful and tell each the good…

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June 29, 2015

New Fundraising Partner offers $500 Prize

David Cox

Our new fundraising partner Darelle is offering a chance to win a $500 Gift Card without purchasing anything!

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Win a $500 Gift Card with darelle! @darelle is a new online marketplace created to benefit charities, businesses, and consumers. Weve partnered with them on a fundraising initiative where they are donating $1 to the Rare Disease Foundation for every new member that joins their site, chooses us as their charity of choice and joins a Buy Request (no purchase necessary) AND theyre giving one lucky new member a $500 Gift Card as well! Click on this link and follow the three easy steps to help…

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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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Rare Finds 2015

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Vancouver Rare Finds a resounding success! Over 225 guests entered the flow, enjoying absolutely amazing food in a great space. Over $120,000 was raised and will be available for immediate funding of our May microgrant competition!


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