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.
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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
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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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
5th Annual Rare Disease Day Conference 2013, Pantages Hotel, Toronto, Ontario ~ Feb 27- 28, 2013
» Presentations Day 1
» Presentations Day 2
CORD Rare Disease Day Dinner and Awards Gala ~ Feb 27, 2013
Rare Disease Day Conference 2012: Innovations in Research, Therapies and Policy for Rare Disorders, Ottawa, Ontario ~ Feb 29 - Mar 1 , 2012