CORD receives "warm" response to call for National Plan for Rare DIseases from MPs on House Health Committee, June 3, 2010

• “Canada needs national 'orphan-disease' strategy,' MPs hear.” Vancouver Sun. 3 June 2010.

CORD gives "thumbs up" to Ontario Citizen's Council Report on Funding Drugs for Rare Diseases. Read the report and CORD's Response

• Citizen's Council Report
• CORD's response with Citizen's  Council Report
  • Personal Perspective, Jocelyn Gardner
  • Personal Perspective, Audrey Segal

Radio Show on Rare Disorders

Beginning Tuesday, June 1, 2010, on station CKIA, 88.3 FM in Quebec, a discussion on rare disorders will be taking place on the show Rare Specimen (www.specimenrare.com)
Each week, a rare disease will be unveiled. Scientific commentator, cultural commentator, and also very interesting guests who are touched closely or more distantly by a rare disorder.

Host: Marjolaine Verville
Scientific commentator: Dr. Gail Ouellette
Cultural commentator: Philippe Septembre

Produced in collaboration with the Quebec Network of Orphan Diseases, this show is broadcast every Tuesday from 2:00 pm to 2:30 pm, and rebroadcast on Thursdays from 5:00 pm to 5:30 pm.
Tune to 88.3 FM or, if you are outside the province, go to http://meduse.org/ckiafm/ and listen to the broadcast live!

NIH-Funded Research Study

The National Human Genome Research Institute at the National Institutes of Health (NIH) is sponsoring a study that seeks to learn more about how parents of children with an undiagnosed medical condition think and feel about their child's condition. We hope that this knowledge will improve the health care and counseling for these parents. Men and women who are 18 years or older and have at least one child with a medical condition that has remained undiagnosed for more than 2 years are needed to take part in this study.

If you would like more information regarding this study, please visit:
http://clinicaltrials.gov/ct2/show/NCT00955370?term=undiagnosed&rank=2

European Strategy on Rare Diseases is Adopted by Health Ministers of the EU

A European strategy that calls upon Member States to implement national plans for rare diseases, before the end of 2013, was adopted by the Council of Health Ministers of the EU on June 9, 2009. » More info

Upcoming Events

• July 21 - 24, 2010 - 10th CASS International Conference, Montreal, Quebec. For more information: www.angelmancanada.org
• September 17 - 18, 2010 - Regional Consultation on Rare Disease and Orphan Drug Policy, Toronto, Ontario
• September 30, 2010 - Annual Action Day at Parliament Hill
• October 1 - 2, 2010 - Annual Conference on Rare Disorders, Sheraton Ottawa Hotel, Ottawa, Ontario

Past Events

• Regional Consultation on Rare Disease and Orphan Drug Policy, Montreal, Quebec ~ May 7, 2010
• Regional Consultation on Rare Disease and Orphan Drug Policy, Halifax, Nova Scotia ~ April 16, 2010
• Extraordinary Measures screening Halifax ~ April 18, 2010
• N of 1: Working Together to Meet the Challenge of Rare Disorders ~ May 1-2, 2009
• Newsmakers Breakfast ~ April 30, 2009
• A Day at Parliament Hill ~ April 30, 2009
• Innovative Approaches for Access to Innovative Therapies Workshop (for Rare Disorders) ~ Mar 2-3, 2009
• Making Sense of Heath Technology Assessment (HTA) Workshop: Challenge of Rare Disorders ~ Mar 1, 2009