Seven in 10 Canadians Unaware of Potentially Fatal Lung Disease
Pulmonary hypertension is a rare and incurable disease which results in high blood pressure in the lungs. Affecting up to 10,000 Canadians, the rare lung disease is often misdiagnosed or confused with a variety of other illnesses, and has a very low profile, even among healthcare professionals.
» Attached Fact Sheet
» Pulmonary Hypertension Association of Canada, Toronto Chapter
CORD Global Genes Research Fund
At the 3rd Annual Conference, the Canadian Organization for Rare Disorders launched the CORD Global Genes Research Fund. Individuals, patient organizations, and corporations were invited to host "jeans days" to raise funds for the Canadian Institute for Health Research first research competition for rare diseases.
CORD also used the opportunity to host its own "global jeans" day, inviting all conference attendees to wear jeans and to make a contribution on site. Conference participants were clearly enthusiastic about the Global Genes campaign and also genuinely delighted to be able to participate comfortably in their jeans.
Also launched at the 3rd Annual CORD conference was a new dedicated website which allows all fundraisers to post their campaigns and invite individual contributors to donate online.
The CORD Global Genes campaign and website, www.corddonate.ca, will raise awareness about rare diseases, their impact on individuals, and progress through research. CORD is grateful to the Children's Rare Disease Network for the use of the Global Genes logo and public relations material and for the opportunity to be part of an international community to increase awareness and support for rare diseases.
Canada's "Chance for Life" Strategy
Canadians with rare disorders need timely access to innovative therapies. Many of these represent the only effective therapy for severe, life-threatening disorders. They are often approved with “early-stage” evidence to allow patients access while additional data are collected. While some therapies are expensive on an individual patient basis, reﬂecting the high cost of development and small patient populations, the total budget impact may be very low. » More info
Position Paper on Canada's Orphan Drug Policy
Canadians suffering from rare debilitating or life threatening diseases need an Orphan Drug Policy that will assure Canadians with rare diseases have timely affordable access to the best therapies and provide competitive incentives for Canadian-based companies to engage in research and development to bring new therapies to market. This paper discusses the rationale for orphan drug policies and the recommendations for an effective “made-in-Canada” policy. » More info
Private Members Motion (M-426)
On May 17, the House of Commons passed a Private Members Motion (M-426) on Rare Diseases. MP Don Bell from North Vancouver worked with members of all parties to gain support for this initiative and thankfully both the Conservatives and NDP joined the Liberal Caucus and voted unanimously for this motion. As a result the Government will now work toward addressing rare diseases in Canada, establishing and orphan drug policy and finally acknowledging that this is a critical issue for many Canadians. » More info