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The Rare Disease Foundation with the Children's Organ Transplant Society invites you to attend our 3rd Sibling Day (2nd in Vancouver) at the BC Children's Hospital'…

Please RSVP as soon as possible!

Our Sibling Day promotes and enhances the quality of life of siblings of children with rare and undiagnosed disease by providing creative & fun activities that…

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

(full size version here)

 

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.

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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