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

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…

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The Face of Rare Diseases

OfflinePhoto of David Cox
July 21, 2015

Exciting New Partnership for Research Grants

David Cox

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 four years, beginning in March 2016!

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

Washington, D.C., July 15, 2015 - The National Organization for Rare Disorders (NORD), the leading independent, nonprofit organization committed to the identification, treatment, and cures of rare diseases, has announced the availability of new research grants to study rare diseases. The deadline to submit abstracts and letters of intent is July 31

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 related to Alveolar Capillary Dysplasia (ACD). 
  • Cat Eye Syndrome - One (1) grant of up to $30,000 for a clinical research study related to the diagnosis and/or treatment of Cat Eye Syndrome..
  • Creutzfeldt-Jakob Disease - One (1) grant of up to $40,000 for a clinical research study related to the…
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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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Event Calendar

Sep16

Vancouver Area Parent 2 Parent Resource Network

Wednesday, September 16 7PM → 9:30PM PT

Sep19

Ottawa Family Picnic

Saturday, September 19 1PM → 3PM PT

Sep24

Toronto Area Parent 2 Parent Resource Network

Thursday, September 24 7PM → 9PM PT

Oct06

Ottawa Area Parent 2 Parent Resource Network

Tuesday, October 6 7PM → 8:30PM PT

Oct22

Toronto Area Parent 2 Parent Resource Network

Thursday, October 22 7PM → 9PM PT

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