Reminders

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

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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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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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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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April 3, 2018

Browns Social House Grandview Donates $5,000!

David Cox

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 24th Ave). When Kyle decided to have a live staff training exercise at the new location, he invited dozens of family and friends of his staff to attend the event along with his own extended family & friends. Kyle picked up the food and beverage tab and collected tips and donations from the crowd, which he then donated to the Rare Disease Foundation. He personally topped up the donation to $5,000 and is seen here presenting the cheque to Executive Director David Cox.

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Living without a diagnosis?

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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 rarediseasefoundation.org

Rare is Everywhere!

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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!  Amazon.ca   Amazon.com  

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The Face of Rare Diseases


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