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The Face of Rare Diseases

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Listen in as Executive Director David Cox, Parent and Rare Finds Co-Chair Stacey Vogl, and donor/supporter Suman Bakshi are interviewed by Don Shafer on Roundhouse Radio. Prog…

Listen to the full 44 minute segment at your leisure right HERE!

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Ewing sarcoma forms in bone or soft tissue and is a rare disease. Incidence for all ages in the United States are one case per one million people, and in 9-10 cases per one m…

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Another wonderful, supportive blog post by our longtime sponsor and partner, Ariane Colenbrander at Vancouverscape!

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Parent 2 Parent Resource Networks Launching in Alberta and Newfoundland.

Our network for connecting families at a local level is growing. Thanks to dedicated parents and committed health care volunteers, we are excited to announce the launch this month of  two new…

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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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February 22, 2016

Social Medial Awareness Campaign for Rare Disease Day

Isabel Jordan

In partnership with the Regroupement québécois des maladies orphelines (RQMO), we are getting the voice of the rare disease community heard! Join our Thunderclap campaign for to make a huge impact on February 29th, International Rare Disease Day so that it will trend on social media!

With the help of co-ordination of Thunderclap, all of our messages will post simultaneously across Facebook, Twitter, and Tumblr letting the world at large know the importance of the Patient Voice, and of the rare disease community. Follow the link below to add your voice to our message!

Agree now to post across your social media accounts, and on the 29th of February, Thunderclap will take care of making a big noise for us!


The Rare Disease Foundation

In partnership with its Resource Network volunteers, a variety of community partners and through the sponsorship of Shire Canada, the Rare Disease Foundation is excited to announce seven separate Rare Disease Day celebrations across Canada. Each event is an expression of a local rare disease community and reflects the connections between patients, families, researchers and health care providers - relationships that are key in improving care for the rare disease community.

While the details of…

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Quick link to Microgrant application page

Applications due May 1, 2016

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Event Calendar


May26

Calgary P2P Resource Network Meeting

Thursday, May 26 7PM → 9PM MT

May26

Jun23

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