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The Face of Rare Diseases

It's less than a month until International Rare Disease Day! Help us celebrate across the country.

Together we can help each other.

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Victoria, Vancouver, Calgary and Ottawa all have something in common when it comes to rare diseases: Each of those cities has for the first time, issued civic proclamations in…

For Immediate Release

International Rare Disease Day Recognized by Increasing Number of Civic Proclamations in Canada

February 23, 2015 

Vancouver – Families, caregivers, researchers and…

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On March 5, Dr. Millan Patel will be presented with a 2015 Rarity Award for Scientific Leadership in the field of rare diseases. The presentation will take place during the an…

Dr. Millan Patel of the Rare Disease Foundation Wins Rarity Award for Scientific Leadership

February 18, 2015

(Location) – Rare Disease Foundation co-founder and board member Dr. Millan Patel…

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Rare Disease Foundation to be marking International Rare Disease Day across Canada at the end of February. Join us!

UPDATE: We are having a new event to celebrate Rare Disease Day. The Victoria Parent 2 Parent Resource Network has added an event to the mix on February 26th. Join them if you're in the area!
We…
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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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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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Parent Sasa Drover from Rare Finds 2014 on why we need to be tomorrow's heroes for rare disease families.

(full size version here)

Sasa Drover - Parent Speaker Rare Finds Gala 2014 from Rare Disease Foundation on Vimeo.

 

OfflinePhoto of Isabel Jordan
February 28, 2015

La journée des maladies rares

Isabel Jordan

Our long-time volunteer Christele du Souich spoke with CBC Radio-Canada's Line Boily on L'heure de pointe in Toronto on February 27the about Rare Disease Day and the many challenges that face the Rare Disease Community.

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La journée mondiale des maladies rares a lieu tous les 29 février, la journée la plus rare du calendrier. 2015 n'étant pas une année bissextile, la journée sera soulignée le 28 février. 
Christèle Du Souich, conseillère en génétique  

Please click on the link below to connect to the L'heure de pointe website & audiofile for the story.


The Rare Disease Foundation is pleased to be a supporter of the 2105 Media Planet UK and European rare disease day campaign. Watch for links to the campaign from our website, Twitter and Facebook accounts, and read the article submitted by our own Isabel Jordan to the European publication.

2015 Rare Disease Day Europe

Isabel Jordan writes about how her online and offline community has influenced and shaped the experience of the rare disease journey for her and her family...and she muses about what is to come. Read more at http://www.rarediseases.co.uk/research/rare-disease-foundation#.VPCgLi5LbIU.


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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


Mar26

Apr07

Ottawa Area Parent 2 Parent Resource Network

Tuesday, April 7 7PM → 8:30PM PT


Apr23

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