OTTAWA, June 2 /CNW Telbec/ - About one in 12 persons or about 270,000 Canadians has a rare disease, yet Canada still does not have a plan to promote development of new treatments or to help Canadians access treatments that are available.
There are an estimated 6,000 to 7,000 rare diseases. About 80% of the diseases are genetic and 75% affect infants and children. What patients with rare diseases have in common is poor access to diagnosis, care and treatment and an emotional burden that increases suffering and affects families and caregivers.
But around the world, this inequity is being challenged.
- More than 350 effective therapies have been developed for unmet needs
since the USA passed the Orphan Drug Act in 1984.
- In 2009, the European Union, based on the principle that those with
rare diseases have the same right to care as those with more common
ones, recommended all member states establish national plans for rare
disorders, with a target of 2013.
The Canadian Organization for Rare Disorders (CORD) www.raredisorders.ca continues to call for a Canadian Plan for Rare Disorders and will participate in a multi-disciplinary Round Table on Rare Disorders being hosted by the Standing Committee of Health on Thursday, June 3rd. MPs on the Committee have come together to hold the Round Table on Rare Disorders to learn more about the issue, hear from patients and speak with experts about how Canada can follow the lead of the US and the EU.
Who: Durhane Wong-Rieger President of CORD
Peter Brenders, President and CEO of BIOTECanada
Gail Ouellette, President and CEO of Gail Ouellette, Quebec
Coalition for Rare Diseases
Dr. Jean-Luc Urbain, President, Canadian Association of
Maureen Coleman, President, Carcinoid NeuroEndocrine Tumour
What: Standing Committee on Health - Round Table on Rare Disorders
Where: Room 209, West Block
When: Thursday, June 3, 2010
7:30 AM - 8:45 AM
The Round Table will be open to the media. Media are requested to confirm their attendance. Durhane Wong Rieger and Peter Brenders will be available for interviews after the Roundtable.
SOURCE Canadian Organization for Rare Disorders
For further information: For further information: David Rodier, NATIONAL Public Relations, firstname.lastname@example.org, Tel: (613) 233-1699 X 243, Cell: (613) 884-2215