Reminders

Home

The Face of Rare Diseases

Image Preview

Victoria, Vancouver, Calgary and Ottawa all have something in common when it comes to rare diseases: Each of those cities has for the first time, issued civic proclamations in…

For Immediate Release

International Rare Disease Day Recognized by Increasing Number of Civic Proclamations in Canada

February 23, 2015 

Vancouver – Families, caregivers, researchers and…

Read More »
Image Preview

On March 5, Dr. Millan Patel will be presented with a 2015 Rarity Award for Scientific Leadership in the field of rare diseases. The presentation will take place during the an…

Dr. Millan Patel of the Rare Disease Foundation Wins Rarity Award for Scientific Leadership

February 18, 2015

(Location) – Rare Disease Foundation co-founder and board member Dr. Millan Patel…

Read More »
Image Preview

Canada Drives donates $6000 to Rare Disease Foundation

Canada Drives, a Vancouver-based business that helps people across Canada find auto-financing programs, announced today the launch of their innovative community outreach program with a donation of…

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)

Sasa Drover - Parent Speaker Rare Finds Gala 2014 from Rare Disease Foundation on Vimeo.

 

OfflinePhoto of David Cox
June 29, 2015

New Fundraising Partner offers $500 Prize

David Cox

Our new fundraising partner Darelle is offering a chance to win a $500 Gift Card without purchasing anything!

darelle-logo-full-lowres.png

Win a $500 Gift Card with darelle! @darelle is a new online marketplace created to benefit charities, businesses, and consumers. Weve partnered with them on a fundraising initiative where they are donating $1 to the Rare Disease Foundation for every new member that joins their site, chooses us as their charity of choice and joins a Buy Request (no purchase necessary) AND theyre giving one lucky new member a $500 Gift Card as well! Click on this link and follow the three easy steps to help…

Read More »

OfflinePhoto of David Cox
March 30, 2015

Rare Diseases Campaign Launched!

David Cox

The Rare Disease Foundation participated in Mediaplanet Canada's Rare Diseases campaign, released on March 28th through the National Post.

Media Planet Rare Diseases.png

We recently participated in Mediaplanet Canada’s Rare Diseases campaign in which many industry leaders united to provide Canadians with a comprehensive view of Canada’s healthcare system and the policies that affect the lives of those living with or affected by rare disorders. The campaign was distributed through the National Post on March 28th 2015 and is published online: http://bit.ly/19yvbep


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
  

1 in 12 (or 1 in 10)

The statistic of 1 in 12 (or 1 in 10) people being affected with a rare disease is often quoted but its basis is rarely explained. We believe the actual chance of someone being affected with a rare disease in their lifetime (called lifetime prevalence) cannot be determined as there are not enough people trained to diagnose rare diseases and some conditions are either too severe to be compatible with life or are quite mild so are missed. There are also a large number of rare diseases waiting to be described so any estimate is likely to be an underestimate. One could even say every disease is rare because the genome, environment and lived experience of each patient form a unique constellation. With these caveats in mind, we calculate the lifetime prevalence of rare diseases at between 1 in 12 and 1 in 13 by:

1. Summing the prevalences of the 500 most common rare diseases on the Orphanet prevalence report
2. Removing all birth defects from the list.
3. Adding the prevalence of major birth defects and intellectual disability in the population (5%, range for this estimate is 2.3% to 6%).
 
Many people tell us they do not think that 1 out of every 12 people they know has a rare disease. We believe our estimate does not match common experience because a lot of children with rare diseases do not survive and because a lot of people who have rare diseases look completely normal to the outside observer.            MP/2014

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

Rare Finds 2015

IMG_8547.jpg

Vancouver Rare Finds a resounding success! Over 225 guests entered the flow, enjoying absolutely amazing food in a great space. Over $120,000 was raised and will be available for immediate funding of our May microgrant competition!

Event Calendar

Aug04

Ottawa Area Parent 2 Parent Resource Network

Tuesday, August 4 7PM → 8:30PM PT


Sep01

Ottawa Area Parent 2 Parent Resource Network

Tuesday, September 1 7PM → 8:30PM PT

Sep24

Toronto Area Parent 2 Parent Resource Network

Thursday, September 24 7PM → 9PM PT

Oct06

Ottawa Area Parent 2 Parent Resource Network

Tuesday, October 6 7PM → 8:30PM PT

Load More

Viewed 197,566 times