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Chef Tyler Day accepts an award at the Rare Disease Foundation's annual Rare Finds Gala in Vancouver on April 26. The award marks 5 consecutive years of commitment and par…

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Kyle Anderson is the owner of two Browns Social House restaurants in White Rock and South Surrey, BC. His newest location opened last week at Grandview Corners (160th St. and …

Thanks to Kyle Anderson and his staff at Browns Social House, Grandview Corners, South Surrey, BC!

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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 Dr. Millan Patel, millan at

Photo of David CoxOffline
April 2, 2018

CBC Radio Interview on Medical PTSD

David Cox

Have a listen to our Board Chair, Isabel Jordan being interviewed on CBC Radio about medical PTSD and it's relationship to parents and patients affected by rare disease.

Photo of Isabel JordanOffline
November 20, 2017

Benefit Brew from Phillips Brewing

Isabel Jordan

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!

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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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