Reminders

Home

Tickets are on sale now for our premier gala event - Rare Finds.

 

Join us on April 26 at our signature gala event at VanDusen Botanical Garden.

We are delighted to present our fifth annual Rare Finds, A Feast for the Senses! Featuring many of Vancouver's top…

Read More »

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…

Read More »

Rare Disease Foundation is seeking help from our Canadian community of families in order to create our first Public Service Announcement. This PSA will help to not only increa…

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

Read More »

International Rare Disease Day 2014

Join Together for Better Care

Rare Disease Day 2014 passed and, by all measures, was a resounding success! Events in Toronto and Vancouver showcased the success of both our Microgrant research program and the importance of our Parent 2 Parent Resource Network. While in Ottawa, the second annual awareness building outreach at CHEO saw not only an increase in the profile of our Ottawa Parent 2 Parent Resource Network, but also an amazing almost $2000 raised by our volunteers and family community!

What an incredible community to be a part of!

Many thanks to our Vancouver and Toronto event sponsors Genzyme and Novartis as well as The Lazy Gourmet.

A 12-year-old girl pleaded Monday for the Ontario government to cover the cost of an expensive drug to fight her rare disease.

Madi Vanstone from Beeton, Ont., has a rare form of cystic fibrosis. The drug Kalydeco has improved her life “significantly,” she said, allowing her to play with her friends and climb the stairs without struggling for breath.

A 12-year-old girl pleaded Monday for the Ontario government to cover the cost of an expensive drug to fight her rare disease.

Madi Vanstone from Beeton, Ont., has a rare form of cystic fibrosis. The drug Kalydeco has improved her life "significantly," she said, allowing her to play with her friends and climb the stairs without struggling for breath.

"I didn't have any energy, I had headaches all the time, bellyaches," she said. "And now, that's just gone."

Her family and friends have been…

Read More »

Researchers and clinicians around the globe who are looking for a genetic basis for any number of rare diseases have a new resource to turn to — a web portal for genetic and phenotypic information on rare diseases developed through an international collaboration and funded by several Canadian entities

Canada Launches Rare Disease Portal of Genetic, Clinical Data

 

NEW YORK (GenomeWeb News) - Researchers and clinicians around the globe who are looking for a genetic basis for any number of rare diseases have a new resource to turn to - a web portal for genetic and phenotypic information on rare diseases developed through an international collaboration and funded by several Canadian entities.

The PhenomeCentral database is a secure…

Read More »
Load More

badge_video.png

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
  

Resources

Join our
online community

To access links to

resources wiki
forums
video library of meetings
meeting webcasts
website search
parent blogs

New member registration
       Register
Already a member?
       Sign In

Event Calendar


Apr26

Rare Finds 2014

Saturday 7PM → 11PM PT

May06

May21

May21

Load More

Viewed 96,298 times