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Help our Rare Disease Community Start an Evolution! Check out this UBC campaign and vote for the Rare Disease Foundation. It take less than a minute to register - your vote he…

What is the project? UBC's Start an Evolution is a fundraising and alumni engagement campaign.  By reaching out to the broad UBC community, this campaign aims to connect alumni with ongoing…

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Rare Disease Foundation is seeking help from the rare disease community in order to create our first Public Service Announcement. This PSA will help to not only increase aware…

The Rare Disease Foundation is urgently requesting our community's help to get our message out.  Postpro Media and One Twenty Three West are two companies that are generously donating their time to…

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Rare Finds 2014 a Resounding Success

With over $118,000 raised, Rare Finds 2014 was a huge success we are grateful to our sponsors, donors, volunteers and guests.

Parent Sasa Drover from Rare Finds 2014 on why we need to be tomorrow's heroes for rare disease families.

(full size version here)

 

A young girl’s rare disease may provide clues to the genetic causes of obesity

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For one family, a young girl's diagnosis with a rare genetic disease ended years of tests and referrals to explain her puzzling symptoms: an overgrowth of fatty tissue on specific parts of her body including her belly and one leg.

For the researchers who made the diagnosis, it provides insight into a rare, poorly understood disease and may shed light on the genes that cause obesity.

"This case illustrates how studying rare genetic diseases can inform our understanding of common diseases,"…

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July 29, 2014

New Brunswick Funding Rare Disease Drugs

Isabel Jordan

28 July 2014
FREDERICTON (GNB) – The provincial government has established the New Brunswick Drugs for Rare Diseases Plan which will provide assistance to those with certain rare diseases who face high drug costs.

 

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"The cost of drugs to treat rare diseases can sometimes reach a million dollars per year per patient, and often, due to the rarity of the conditions, demonstrating a drug's efficacy through clinical trials is difficult," said Health Minister Hugh Flemming. "These factors make it unlikely that these drugs would be covered under most drug plans. I am pleased that our government was able to bring forward this plan which will help alleviate the financial burden of those with these rare…

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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 offer each other, regardless of diagnosis.

-A Rare Disease Foundation Parent
  

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Event Calendar


Sep17

Vancouver Area Parent 2 Parent Resource Network

Wednesday, September 17 7PM → 9:30PM PT

Sep25

Bringing Your Best Resources to the Table

Thursday, September 25 7PM → 9PM PT

Oct18

It's All About Me - Sibling Appreciation Day

Saturday, October 18 9:30AM → 2PM PT

Oct23

Toronto Area Parent 2 Parent Resource Network

Thursday, October 23 7PM → 9PM PT

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