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May 12, 2012

The Diamond Race is On

Isabel Jordan - In the news

DiamondRace_Jennifer_Nick.jpg

The second annual Lux Jewels Diamond Race returns May 26. Couples of all ages and backgrounds will spend the day racing around downtown Vancouver performing various mental and physical challenges for their chance to win the grand prize - a  one-carat, cushion-cut diamond valued at $10,000. Read more at wevancouver

You can support the teams by donating to the Rare Disease Foundation in their name, check out the list of teams to donate.

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April 24, 2012

RARE FINDS 2012 A ROARING SUCCESS!

Isabel Jordan - In the news

This year's RARE FINDS, signature fundraising event, was a Feast for the Senses!  The third annual event was held at the Ferrari Maserati of Vancouver Showroom on Saturday, April 21st and sold out to welcome 250 guests and sponsors! Ten celebrated Executive and Pastry Chefs from Vancouver and environs competed to please and tease the palates of our guests, while cooking for them "in the round".

The Top Chef Award went to Pastry Chef, Stephanie Greenslade from the Fairmont Waterfront Hotel for…

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April 21, 2012

Rare Finds Gala Featured on Notable.ca

Isabel Jordan - In the news

If you're in the mood to do some good while living it up this weekend, might we suggest you grab tickets to this do-good function set to take place Saturday night. It's guaranteed to provide the perfect venue for a little networking and offer you the perfect excuse to put on your party dress, or dust off that summer-style suit. Read more on notable.ca

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The Power of Community

Parents don't know where to turn when faced with a diagnosis of a very rare or unique condition. If a relevant disease-based organization exists, it may be national or international in scope and other affected families may live far away. The Rare Disease Foundation can help at a local day-to-day level. Our parents have found that they have much to offere each other, regardless of diagnosis.

-A Rare Disease Foundation Parent
  

Research Feature

January 11, 2012

Gene find could help those diagnosed with Joubert Syndrome.

Roberta Pak - Research Features

This article not only highlights the great scientific research being done on rare diseases in Canada but also discusses some of the issues facing those suffering with a rare disease.

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DONATE

Lux Jewels Diamond Race

Support the teams in the Lux Jewels Diamond Race by making a donation to the Rare Disease Foundation on their behalf. The amount of money raised by each team for the Rare Disease Foundation will not only benefit the foundation directly, but will also help the teams in the Lux Jewels Diamond Race by reducing their time, if they are one of the fastest 5 teams, and win a diamond.

Click here to view the teams and donate.

Rare Disease Day 2012

Thank You for Joining Us for an Evening of Celebration

What a pleasant evening! Excellent speakers, great food and a community pulling together. Learning how the Rare Disease Foundation is supporting research into rare diseases and how together, we're all making a difference made for a very special occasion.

 

If you couldn't make it person, you're welcome to view our presentations via our webcast. Click the link below for more information.

February 29th we came together and showed the world the strength of our community.

Event Calendar

May26

Lux Jewels Diamond Race

Saturday, May 26 PT · Export
Jun05

Just Singin' Round Singer-Songwriter Showcase

Tuesday, June 5 6PM → 10PM PT · Export
Jun20

Ottawa Area Parent 2 Parent Support Network

Wednesday, June 20 7PM → 8:30PM ET · Export
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Resources

Parents don't often know where to turn when faced with a diagnosis of a very rare or unique condition. Join our online community for links to resources (both general and parent edited local wikis) and parent blogs. As parents, we have found that we have so much to offer one another, regardless of diagnosis.

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Transforming the world of rare disease care

The Rare Disease Foundation is committed to growing and developing a community which provides a new approach for rare disease research and care.

We provide funding to inspired clinicians and scientists for their patient-focused projects. These studies directly impact the care and quality of life of a child affected by a rare disease.

Our virtual, as well as our bricks and mortar parent groups are based on the mutual desire to enhance our families' lives through support, mentorship, networking and education.

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