Image Preview

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…

Read More »
Image Preview

Fantastic inaugural Tamarack Ottawa Run Weekend for the Rare Disease Foundation Runners!

Sarah-Dominique Jauron Belanger and her team of 17 runners took part in the annual Scotiabank Charity affiliated Tamarack Ottawa Run Weekend, with many of them running a half-marathon and one brave…

Read More »
Image Preview

Vancouver Rare Finds a Heartwarming Success!

A huge thank you and shout out to all the wonderful chefs, mixologists and brewmasters who gave of their time and craft on April 8, 2017 to make Rare Finds Vancouver a heartwarming success.  Over…

Read More »
Image Preview

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…

Read More »

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 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.

Living Without a Diagnosis booklet

OfflinePhoto of Isabel Jordan
June 20, 2017

Genetic Non-Discrimination Act PASSED in Canada!

Isabel Jordan

OfflinePhoto of Isabel Jordan
June 20, 2017

Power to Be...Victoria P2P Network

Isabel Jordan

Rare Disease Foundation Parent 2 Parent Resource Network paddling together with Power 2 Be in Victoria!

Load More

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!  


Join our
Online community

Resources wiki


Video library of meetings

New member registration
Already a member?
       Sign In

Event Calendar

Viewed 950,486 times