News & Events

Orphans Find A Home. After years of neglect by pharma companies, rare disease treatment is coming into the limelight
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18th EURORDIS Round Table of Companies workshop looks at corporate responsibility and innovative policies for improving access to orphan medicinal products
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A Phase III Multicenter Study of SBC-102 (sebelipase alfa) in patients with Lysosomal Acid Lipase (LAL) Deficiency.
Click here for more information.

Orphan Drug Prices Under Siege in Austerity-Minded Europe
Treatments for rare diseases are hot properties for drugmakers, who covet the medicines for their exclusive markets, tax breaks and through-the-roof prices. Now that’s changing April 7,2013  » Read more

Canadian Organization for Rare Disorders Welcomes Announcement of Orphan Drug Framework
TORONTO, Oct. 3, 2012 /CNW Telbec/ - The Canadian Organization for Rare Disorders, on behalf of the 2.8 million Canadians with rare disorders, welcomes Health Minister Aglukkaq's announcement of the "first ever Canadian framework to increase access to new treatments and information" and the launch of Orphanet-Canada. The highly anticipated regulatory framework is a major step forward, opening the way for research and development of new drugs for "orphan" indications and improving access to existing therapies. » Read more

We would like to congratulate the founding of Rare Voices Australia. Click here for more information.

The ICORD Yukiwariso Declaration
The International Conferences for Rare Diseases and Orphan Drugs (ICORD) launches a Declaration for policy and action plans for rare diseases – The “ICORD Yukiwariso Declaration -The need for world-wide policy and action plans for rare diseases" » Read more

Canadian life and health insurance industry launches industry initiative to protect Canadians' drug coverage
Today, the industry launches an industry-wide pooling agreement to protect fully insured private drug plans from the full financial impact of high cost drugs. Click here for more details.

Lack of catastrophic drug program a black eye for Canada,
Globe and Mail, April 5, 2011 » Read more

National drug policy for rare diseases has fallen between the cracks
, Globe and Mail, April 5, 2011 » Read more

Rare Disease Day 2011 Media Coverage
Health-care crusader battles to ‘fix the broken system’ - Toronto Star, February 27, 2011» Read more

Survey on rare diseases in the UK
Over the summer of 2010, Rare Diseases UK (RDUK) carried out one of the largest surveys of patients and families affected by rare diseases in the UK. » Read more

Arctic Quest 2011

On August 13, 2011, one dozen Canadians with rare disorders will set forth on an extraordinary quest. Their destination: the Arctic Circle. Their goal: to show that people with rare disorders can do just about anything…with the right treatment and support.
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CORD Global Genes Research Fund
At the 3rd Annual Conference, the Canadian Organization for Rare Disorders launched the CORD Global Genes Research Fund.

» Read more
» www.corddonate.ca

Upcoming Events

Rare Disease Day Conference, Pantages Hotel, Toronto, Ontario ~ Feb 27 - 28, 2013

Rare Disease Day Awards Gala, Pantages Hotel, Toronto, Ontario ~ Feb 27, 2013

Empowering Patients to Transform Healthcare, Toronto, Ontario ~ Fall 2013

Past Events


5th Annual Rare Disease Day Conference 2013, Pantages Hotel, Toronto, Ontario ~ Feb 27- 28, 2013
» Agenda
» Presentations Day 1
» Presentations Day 2

CORD Rare Disease Day Dinner and Awards Gala ~ Feb 27, 2013
» Program

Rare Disease Day Conference 2012: Innovations in Research, Therapies and Policy for Rare Disorders, Ottawa, Ontario ~ Feb 29 - Mar 1 , 2012
» Presentations
» Agenda

CORD Rare Disease Day Gala ~ Feb 29, 2012
» Program

Tipping Point for Rare Disorders Conference ~ Sep 15 - 16, 2011
» Presentations
» Agenda

Arctic Quest 2011 ~ Aug 11, 2011
» Web page
» Photos
» Video Trailer

Ensuring Value of Patient Submissions to Health Technology Assessment
Toronto, Ontario ~ Feb 15, 2011
Vancouver, British Columbia ~ Mar 31, 2011

Rare Disease Day 2011