Rare Disease Day 2010 marks the beginning of a year that will lead to a decade of unprecedented opportunities for rare diseases and disorders in Canada. We have much to celebrate. Most provinces now provide enhanced newborn screening for rare genetic disorders. Many patients with previously untreated rare conditions now have access to life-saving and life-enhancing therapies, including innovative medicines.

The first CIHR-funded grant competition for research on rare diseases will be announced this year. And with the support of the federal government, we anticipate regulations and legislation to support rare disorders.

But we still have a long way to go. Progress and opportunities have come about only through dedicated efforts of many individuals, including those affected by rare disorders, those treating and supporting rare disorders, those doing research and drug development, and those who craft the policies and legislation.

The Canadian Organization for Rare Disorders is offering all individuals and their organizations a year’s worth of activities and events that will help us continue the progress on rare disorders in Canada. Some are fund-raising projects that can be held in local communities; some will raise public awareness and support for rare disorders; some will educate and engage healthcare professionals; and all will help to opportunities for understanding and supporting rare disorders.

In celebration of Rare Disease Day, CORD invites patients, families and patient groups to send us their videos of “extraordinary” people affected by rare disorders.  We will provide space on our website to share your stories.  Please watch the CORD website for further details.

If you wish to get involved in any of our Rare Disease Day events, please send us an email at info@raredisorders.ca or contact our office today.

 For more information on CORD and our upcoming events, please visit our website www.raredisorders.ca.

Who is CORD?
CORD is Canada's national network for organizations representing all those with rare disorders. CORD provides a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders. CORD works with governments, researchers, clinicians and industry to promote research, diagnosis, treatment and services for all rare disorders in Canada.

What are CORDs Key Challenges?
CORD represents the orphan disorders community in the development of Canadian Orphan Drug Policy, including the proposed Expensive Drugs for Rare Disorders program within the National Pharmaceutical Strategy CORD is working to promote state-of-the-art Newborn Screening in all provinces and territories. CORD is working to ensure Canada’s Clinical Trials Registry works effectively for those with rare disorders. CORD is committed to increasing access to genetic screening and genetic counseling for all rare disorders.

Contact CORD:
Canadian Organization for Rare Disorders
151 Bloor Street West, Suite 600
Toronto, Ontario M5S 1S4 Canada
Phone: (416) 969-7464
Toll Free: (877) 302-7273
www.raredisorders.ca