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Juan Flechas is honouring his deceased brother Cristian David by competing in the Mont Tremblant IronMan. Check out his short video here!

See video below this photo of Cristian and Juan.

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This morning Dave Proctor started his 66 day journey across the country and we need you to help him along the way. Participate in person at one of Outrun Rare events being hel…

Today marked the first day of ultra-runner Dave Proctor's remarkable endeavour to run across Canada in just 66 days and in doing so, breaking the world record. Dave and wife Sharon are no strangers…

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Fund Development and Community Engagement Coordinator

The Rare Disease Foundation is very excited to announce that Sylvia Eng is joining our team as Fund Development and Community Engagement Coordinator, effective June 27, 2018. 

Sylvia is English/French…

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Activating small amounts of money and leveraging the people and technology already in the system, microgrants make a difference in the rare disease space.

Our Microgrant program has some unique properties that differentiate it from traditional grant programs. One of the things we're most proud of is that our rare disease community takes part in the…

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June 22, 2018

CTV National Interviews Dave Proctor

David Cox

Interview with Dave Proctor of Outrun Rare...the cross Canada record breaking attempt that begins June 27 in Victoria, BC!

This summer Dave Proctor will be running across Canada to raise funds for the Rare Disease Community his family is a part of. He is appealing for our help to get him moving every morning. Here's your chance to be a part of it!

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Living without a diagnosis?


Many in our community live on a roller coaster as they search for a diagnosis for their child or loved one. It usually takes years and involves many visits to specialists, travel, late night web searches and talking to many, many people. At least half of our community never find a diagnosis and there are few road maps for this journey so we set out to create one!  This booklet is the product of literature searches, review of similar brochures by Contact a Family and others, structured interviews with 12 families, several focus groups and many rounds of review by experts from health care and from families. We are so grateful to all who participated and generously gave of their time! We hope this booklet will be a useful guide and support for families as they walk their own unique and winding road.

Click here: Living Without a Diagnosis booklet

If you would like to edit this booklet's "Resources" section for your local region, please contact Dr. Millan Patel, millan at

Rare is Everywhere!

RiE book cover.jpg

This beautiful book is touching sweet little hearts everywhere! Author/illustrator Deborah Katz is being incredibly generous and donating book proceeds to the Rare Disease Foundation. Get your copy now!  


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The Face of Rare Diseases

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