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

Our inaugural Edmonton Rare Finds YEG event will be held on Saturday, September 16 at Latitude 53 from 7:00 pm to 11:00 pm. Latitude 52 is located at 10242 106 Street NW, Edmonton. CTV is our media…

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June 25 a team of 11 runners raised $3,605 for the Rare Disease Foundation in our 1st-ever Vancouver run event!

Following in the "foot steps" of the Tamarack Ottawa Run Weekend team of 17 that raised $5,225 in May, a smaller but enthusiastic team of 11 runners raised $3,605 in Vancouver, running either the…

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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?

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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 but most eventually make peace with the search. 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 parents, 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 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


Photo of Isabel JordanOffline
June 20, 2017

Genetic Non-Discrimination Act PASSED in Canada!

Isabel Jordan

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The Face of Rare Diseases

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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