Right now, only 60% of treatments for rare disorders make it into Canada and most get approved up to six years later than in the USA and Europe.
People with rare disorders in Canada are missing out on treatments that could save or significantly improve their lives. This needs to change.
The Canadian Organization for Rare Disorders (CORD) has released Canada’s Rare Disease Strategy, developed with experts from every sector. The Strategy details the extraordinary burden faced by Canadian families with rare illnesses. Challenges include misdiagnosis, unnecessary surgeries, social isolation, financial hardship, lack of treatment options and early death. These are the same challenges faced by Canadians with “non-rare” conditions, but the impact is often much more severe.
Why do we need Canada’s Rare Disease Strategy?
We believe that now is the time to act to provide hope and treatment to Canadians and their families who are impacted by a rare disease. Right now, the approach to rare diseases is fragmented across the country and this means Canadian families with rare illnesses are facing extraordinary challenges. These include misdiagnosis, unnecessary surgeries, social isolation, financial hardship, lack of treatment options and early death. These are the same challenges faced by Canadians with “non-rare” conditions but the impact is often much more severe.
About 1 in 12 Canadians, two-thirds of them children, are affected by a rare disease. But because each specific rare disease affects only a small number of individuals, scientific understanding and clinical expertise may be limited and fragmented across the country. We are asking that patients with rare diseases get the same kind of care and consideration as those with more common illnesses
Publications and Newsletters
About 1 in 12 Canadians, two-thirds of them children, are affected by a rare disorder. But because each disease affects only a small number of individuals, understanding and expertise may be limited and fragmented across the country. The Strategy proposes a five-point action plan that will address unnecessary delays in testing, wrong diagnoses and missed opportunities to treat.
1. Improving early detection and prevention,
2. Providing timely, equitable and evidence-informed care,
3. Enhancing community support,
4. Providing sustainable access to promising therapies and
5. Promoting innovative research
With regard to the cost of orphan drugs, it is important to remember that the only acceptable solutions are those that assure rare disease patients get access to the right drugs in a timely fashion.
CORD believes there are workable solutions. We have consistently called for affordable and sustainable access to rare disease drugs, recognizing the small patient population, the lack of effective alternative therapies, and the overall budget impact as well as per-patient cost.
CORD has (repeatedly) proposed a responsible “managed access” pathway, starting only those patients who meet “evidence-informed” start criteria and maintaining those who continue to meet “treatment milestones” or show net benefits. This approach has been used in Canada for rare and common drugs and is increasingly used in the European Union. Health Ministers have not agreed to meet with CORD and the patient community.
Newborn Screening in Canada Status Report
Rare Disease Ambassadors
Rare Disease Ambassadors are a team of individuals, caregivers or patients who serve as spokespersons on behalf of the Canadian Organization for Rare Disorders (CORD) and Canada’s Rare Disease Strategy.
As an Ambassador, you will be asked to share your story, help promote the Strategy, participate in awareness events, and respond to relevant media inquiries. We will be training more Ambassador’s at future training events, if you are interested please contact us.
Conference: March 30 – 31, 2017
Awards Gala: March 30, 2017
Location: Vancouver, BC
Conference: March 9 – 10, 2016
Location: Ottawa Sheraton
Gala: March 10, 2016 (Sheraton Ottawa)
Rare Disease Day Gala 2016 Photo Album
We are pleased to confirm that the CN Tower will be lit Light Blue on February 28, 2016 in recognition of International Rare Disease Day
Rare Disease Day 2015
Conference: Strategy, Research Updates, Training
March 5 – 7, 2015, Toronto, Ontario
Rarity Awards Dinner Gala: Honourary Gala Chair and Keynote Speaker, The Honourable James Moore, Minister of Industry
Rare Disease Day takes place on the last day of February each year.
The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.
The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.
Since Rare Disease Day was first launched by EURORDIS and its Council of National Alliances in 2008, thousands of events have taken place throughout the world reaching hundreds of thousands of people and resulting in a great deal of media coverage.
The political momentum resulting from Rare Disease Day also serves advocacy purposes. It has notably contributed to the advancement of national plans and policies for rare diseases in a number of countries.
Even though the campaign started as a European event, it has progressively become a world phenomenon, with the USA joining in 2009, and participation in a record-breaking 87 countries around the world in 2015. We hope many more will join in 2016. Some countries have decided to raise rare disease awareness further, for example, Spain declared 2013 as the National Year for Rare Diseases.
Our objective is for the World Health Organization to recognise the last day of February as the official Rare Disease Day and to raise increasing awareness for Rare Diseases worldwide.