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We're a top 10 finalist in Phillips Brewing and Malting Company Benefits Brew contest and we need our community to click us to the top!

Some wonderful people nominated us for the Phillips Brewing Benefit Brew competition and we made the final 10! That means it's time to vote. The winning charity gets a beer named after them and…

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The Bridle Bash Foundation, based in Toronto, Ontario has surprised us with an extremely generous $60,000 donation in support of our microgrant rare disease research program.

The Bridle Bash Foundation was established by a group of friends who are passionate about volunteering and fundraising. They are dedicated to providing financial support to Canadian registered…

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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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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

Photo of Isabel JordanOffline
September 19, 2017

Rare Finds YEG - a Party with a Purpose

Isabel Jordan

Inaugural Rare Finds YEG (Edmonton) an incredible success!

Photo of David CoxOffline
September 1, 2017

USA TODAY Supplement

David Cox

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 difference.

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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


Toronto Parent 2 Parent Resource Network

Thursday, January 25 7PM → 9PM PT


Victoria Area Parent 2 Parent Resource Network

Tuesday, February 13 7PM → 9PM PT


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