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Inaugural Rare Finds YEG (Edmonton) an incredible success!


Congratulations to Stephanie Patel and her amazing team for delivering an incredible inaugural Rare Finds gala, A Feast for the Senses, in Edmonton last Saturday night!  It was a night of glitz…

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Elite ultra-marathoner, Dave Proctor, has partnered with Rare Disease Foundation to raise money for the rare disease community while attemptint to break the Guinnes World Reco…

Okotoks, Alberta, Canada (September 10, 2017) – Dave Proctor, one of Canada’s elite ultra marathoners, will attempt to break the Guinness World Record for the ‘Fastest Crossing of Canada on Foot by…

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Rare Disease Foundation Family Featured in Article Released September 1: For patients struggling with a rare disease, simply talking about their experience can make a huge dif…

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Join us our 2nd annual Rare Finds YYC on October 14

Join us at our 2nd annual Rare Finds YYC "A Feast for the Senses" at Festival Hall, 1215 - 10th Avenue SE, Calgary. The event runs from 7:00 pm to 11:00 pm and features food, drink, entertainment and…

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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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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 me, Dr. Millan Patel, millan at

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August 3, 2017

Rare Finds YEG (Edmonton)

David Cox

Get your tickets today for our FIRST-EVER Rare Finds "A Feast for the Senses" in Edmonton on September 16

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The Face of Rare Diseases

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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Event Calendar


Vancouver Area Parent 2 Parent Resource Network

Wednesday, November 15 7PM → 9:30PM PT


Calgary P2P Resource Network Meeting

Thursday, November 16 6PM → 8PM MT


Toronto Parent 2 Parent Resource Network

Thursday, November 23 7PM → 9PM PT



Toronto Parent 2 Parent Resource Network

January 25, 2018 7PM → 9PM PT

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