News & Events

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
Photos of Rare Disease Day Reception can be seen on our Facebook page » Read more
On February 28, Dr. Kirsty Duncan MP read a statement in the House of Commons » Read more
Global News Canada aired a segment on rare disease that featuring Durhane Wong-Rieger. » See video
'Canadian Organization for Rare Disorders celebrates some research progress' - The Hill Times, March 7, 2011

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

Ontario expands coverage for compassionate drug access
A dying man's fight to gain access to a prohibitively expensive, life-saving medication has moved the government to improve drug access for all those in Ontario suffering from rare disorders.
» Read more

Press Release: Dec 13, 2010 - Dr. Kirsty Duncan Tables Private Member’s Bill on Sickle Cell Disease and Thalassemic Disorders
Dr. Kirsty Duncan, Member of Parliament for Etobicoke North, tabled her Private Member's Bill today, which calls on the government to create a Comprehensive National Strategy for Sickle Cell Disease and Thalassemic Disorders.
» Read more

Rationing body will lose power to decide against new drugs
The Guardian Weekly, Nov 15, 2010
» Read more

The New APHL Invited Speaker Series Proudly Presents: "Inside Phenylketonuria (PKU): Seventy-Seven Years of Discovery and The Role of Families in Driving Science and Health Care''
» Read more

GENETIC DISEASES OF CHILDREN….ADVANCING RESEARCH & CARE CONFERENCE, March 8-9, 2011
 This national conference brings together researchers, clinicians, State and Federal policy makers and industry representatives with the families who look to them for answers.
» Read more

Press Release: Dec 13, 2010 - Dr. Kirsty Duncan Tables Private Member’s Bill on Sickle Cell Disease and Thalassemic Disorders
» Read more

Arctic Quest 2011

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.
» Read more

CORD Global Genes Research Fund
At the 3rd Annual Conference, the Canadian Organization for Rare Disorders launched the CORD Global Genes Research Fund.

» Read more
» www.corddonate.ca

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

“Canada needs national 'orphan-disease' strategy,' MPs hear”

Daily Mail UK

Newborns to be screened for 92 genetic conditions: Trial which focuses on liver problems iams to improve disease management.
To read full article, please visit: Daily Mail Online UK

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, to hear the show please visit: www.specimenrare.com

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. If you would like more information, 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

2012 Rare Disease Day Conference: Innovations in Research, Therapies and Policy for Rare Disorders      February 29, 2012 - March 1st 2012                                    Ottawa, Ontario

                                                                        
CORD Rare Disease Day Gala
February 29, 2012
Ottawa, Ontario

Past Events

Rare Disease Day 2011

February 15, 2011 - Ensuring Value of Patient Submissions to Health Technology Assessment, Courtyard by Marriott Downtown Toronto, Toronto, Ontario

February 28, 2011 - Rare Disease Day, Worldwide

March 31, 2011 - Ensuring Value of Patient Submissions to Health Technology Assessment, Vancouver Marriott Pinnacle Downtown, Vancouver, British Columbia

August 11, 2011 - Arctic Quest 2011, Arctic Circle