Reminders

Home

The Face of Rare Diseases

On Giving Tuesday consider a donation to help fund our Family and Patient Support and our Research Programs.

Together we can help each other.

Image Preview

2014 saw the continuation of an amazing partnership between the Rare Disease Foundation, UBC Recreation, and the BC Children's Hospital Foundation. This year the combined …

On November 20th the UBC student community and the rare disease community came together to make a change in the world of rare disease care. After weeks of fundraising, participants could…
Read More »
Image Preview

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

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…

Read More »
Image Preview

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 »

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

(full size version here)

 

OfflinePhoto of Isabel Jordan
September 29, 2014

Rare Disease Foundation looking for an Executive Director

Isabel Jordan

We're growing fast and we're looking for a dynamic individual who will take responsibility for the leadership and management of the organization as we expands parent resource networks in additional communities across North America and strengthens our relationships with other rare disease communities nationally and internationally.

RDFBanner.jpg

Executive Director Position Summary

The Rare Disease Foundation seeks a dynamic individual who will take responsibility for the leadership and management of the organization as it expands parent resource networks in additional communities across North America and strengthens its relationships with other rare disease communities nationally and internationally. In addition to administrative and financial management, the Executive Director ("ED") will spearhead fundraising and expansion.…

Read More »
OfflinePhoto of Isabel Jordan
September 26, 2014

Lace Up for Kids 2014 Nov 20th!

Isabel Jordan

Our annual partnership with UBC Recreation and BC Children's Hospital Foundation is coming up in November and we can't wait. Every year the students of UBC put on this amazing event and raise money for our research fund at BC Children's Hospital. We need members of our community to help us form teams and support the teams that are skating laps to support our research program.


Lace Up for Kids

Lace Up for Kids 2014 Registration is up!

Join the Rare Disease Foundation community, UBC Recreation students, and BC Childrens Hospital Foundation as together we lace up our skates and raise money for our Microgrant research program.

Form your own team or join an existing one at Lace Up for Kids. Not in the area? Then make a donation towards rare disease research.

Our innovative Microgrant Research Program leverages your donations to find care-focussed solutions for the rare disease…

Read More »
Load More

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.

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


Viewed 131,732 times