Rare Diseases

Rare Diseases in the News

1,000th designation of an orphan medicinal product: improving the lives of patients

European Commission – Press Release, June 07, 2012
Orphan medicines relate to diseases which affect not more than 5 persons in 10.000 in the EU. As a consequence, the economic potential of such medicines is very limited which hampers the development of new medicines. In response, the EU adopted dedicated legislation…..

Canadian insurers will split cost of priciest drug claims

The Globe and Mail, April 02, 2012
Nearly two dozen life insurers are banding together to share the risk of claims for expensive drugs, as costly new treatments for illnesses such as cancer and auto-immune diseases become more common. The problem is becoming more acute as medical research churns….

Orphan drug policies make drug research for rare diseases viable in the U.S. but not in Canada

Business in Vancouver, March 20, 2012
From a sheer market perspective, Allon Therapeutics’ decision to focus on a rare a neurological disorder called progressive supranuclear palsy (PSP) doesn’t add up. After all, only 20,000 North Americans have the disease, compared with 4.4 million Alzheimer’s victims….

Lack of catastrophic drug program a black eye for Canada

The Globe and Mail, April 05, 2011
Canada might not have a national catastrophic drug program, but there are plenty of international models the federal government could look to should it ever decide to adopt one. Canada is one of the only developed countries that doesn’t have a national catastrophic program….

National drug policy for rare diseases has fallen between the cracks

The Globe and Mail, April 04, 2011
Stephen James suffers from symptoms that are as extreme as they are rare: food cravings that compel him to take bolt cutters to the kitchen pantry that his parents have locked, or even a screwdriver to a padlocked freezer. His eating compulsion is due to Prader-Willi syndrome….