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:: Events Archive

 

Previous events in which Orphanet was involved include:

 

 

Rare Disease Day 2016!

 

The Canadian Organization for Rare Disorders (CORD) is hosting a conference and gala from March 9-10. For more details see: https://www.raredisorders.ca/wa_2131825/ 

 

The Children's Hospital of Eastern Ontario (CHEO) is hosting a patient-centred event for Rare Disease Day. 25 families will attend this event in addition to CHEO researchers and staff.

   
   
 

Petition: Put Kids Before Bureaucracy - Turn Heartbreak to Hope 


A petition was started to get health ministers in Alberta, British Columbia, Ontario and Quebec to approve genetic testing for rare diseases now. For more details, and to sign the petition, please visit this website
   
   
 

Canada's first Rare Disease Strategy was released on Parliament Hill on May 25, 2015

 

The Canadian Organization for Rare Disorders (CORD) helped launch Canada's Rare Disease Strategy on Monday, May 25th in Ottawa. A copy of the strategy is available on CORD's website: http://raredisorders.ca
   
   
  M

arch 11, 2015 - Patients at the heart of health science research - The amyotrophic lateral sclerosis (ALS) example

 

The CIHR Café Scientifique took place in Montreal on Wednesday, March 11, 2015, at 7:00 p.m. at the Café des Beaux-Arts

The recording of this event was be presented on Canal Savoir in May 2015.

The video is also available here.

   
   
 

November 17, 2014 - Canadian Rare Diseases Models and Mechanisms (RDMM) Network

 

The Canadian Institutes of Health Research (CIHR), in partnership with Genome Canada, has awarded the Canadian Rare Diseases Models and Mechanisms (RDMM) Network — a first of its kind collaboration —$2.3 million. The network aims to pair clinicians working with patients affected by rare diseases with research scientists to identify the genes that cause rare diseases and to better understand the molecular function of these genes. The RDMM Network, through its scientific advisory committee, will fund at least 24 catalyst projects annually.

For more information, please read the press releases from the University of British Colombia and the University of Ottawa.

   
   
 

November 3, 2014 - Canadian Pediatric Hospital Challenges Gene Patenting for Long QT Syndrome

 

The Children's Hospital of Eastern Ontario has launched a lawsuit against the U.S holders of a gene patent for long QT syndrome. For more information please visit CTV News or CBC.

   
   
November 19 2013, Canadian Institutes of Health Research Roundtable, Chicoutimi, Quebec

Theme: Toward a coordinated approach in support of care for genetic orphan diseases 

 

Roundtable Co-Chairs: 

Étienne Richer, CIHR IG

Catherine Laprise, Canada Research Chair on the Genetics of Asthma

Bernard Brais, Montreal Neurological Institute

 

The Saguenay‒Lac-Saint-Jean (SLSJ) region is a pioneer in the development of organizations and specialized services that provide regional support for the most prevalent genetic diseases. In addition to the efforts of these individuals and organizations, CIHR Institute of Genetics recently declared the promotion of orphan disease research in Canada a priority. In keeping with this priority - and to build on the pioneering efforts of the SLSJ region - the Institute of Genetics has invited key players from the SLSJ region, as well as other provincial experts, to share their experiences and ideas about the development of coordinated strategies in support of the care of orphan diseases.

 

*See the minutes from this roundtable in the Documents section.*

   
   

Canada dedicates up to $2 million toward transnational rare disease projects.

 

The Canadian Institutes of Health Research- Institute of Genetics (CIHR-IG) and Le Fonds de recherche du Québec - Santé (FRQS), along with ALS Society of Canada and Muscular Dystrophy Canada have collaborated on a joint transnational call  with ERA-Net: E-Rare 2 .  Canada will dedicate UP TO $2 million in support of research projects with a Canadian component. Results are available here

 

Rare diseases are a prime example of a research area that can strongly benefit from collaboration on a transnational scale. In Canada, 1 in 12 Canadians has a rare disorder. Rare disease research is hampered by lack of resources at several levels: (1) Few scientists work on one specific disease, (2) There are few patients per disease and they are scattered over a large geographic area, causing difficulties to gather the necessary cohorts, (3) Existing databases and material collections are usually local, small, and not accessible or standardized, (4) Diseases often have complex clinical phenotypes and require interdisciplinary cooperation for research, hence, interdisciplinary approaches to treatment. By participating in a joint transnational call, international research teams will share knowledge and resources in order to accelerate the development of treatments.

   
   
The CIHR Café Scientifique 'Rare or Common? The Role of Genes in Disease' took place in Toronto on February 26, 2013. 
   
   
  Webinar - Orphanet : the portal on rare diseases. A resource for patients, caregivers and health professionals.

The webinar took place on January 17, 2013 12:00 PM (EST) 

You can watch the recorded webinar here : >>>> 

 

A tele-learning workshop of the Care-ring Voice Network

By Quebec Coalition of Orphan Diseases/Regroupement québécois des maladies orphelines (RQMO) and Muscular Dystrophy Canada (MDC)

   
   
  On October 3, 2012 the Honourable Leona Aglukkaq, Minister of Health, announced two initiatives aimed at bringing new hope to Canadians with rare diseases: the creation of a new approach for the authorization of "orphan drugs" and the official launch of Orphanet. The press release can be found here >>>>.
   
   
The CIHR Café Scientifique 'Rare diseases: the essential alliance between patients and researchers' took place in Montreal on October 13, 2012. The Café was webcast. For more information:http://cafe-maladies-rares.mcgill-cihr-ig.ca/
   
   
 

On October 12-13 2012, Orphanet-Canada and Orphanet-Quebec, in collaboration with Orphanet-France, organized a 2 day workshop on rare diseases.

 

The workshop on research in the field of rare diseases took place on October 13, 2012 in Montreal (Qc). The presence of Canadian and French researchers provided an appropriate context to develop partnerships and to ensure greater complementarity of efforts. For more details, please click here >>>>.

 

For more information regarding the franco-québec workshop on Orphanet and rare diseases please click here >>>>. 

 

   
   

On February 29, 2012, the Government of Canada announced its support for research on rare diseases. The announcement was made by Dr. Colin Carrie, Parliamentary Secretary to the Minister of Health at a conference hosted by the Canadian Organization for Rare Disorders. For more information, please visit: http://www.cihr-irsc.gc.ca/e/44944.html 

   
   

 

 

The CIHR Café Scientifique ‘The rare disease next door: A personalized approach’ happened in Ottawa on January 11, 2012. The broadcast of the Café is available through the Café website, at: http://cafe-rare.mcgill-cihr-ig.ca/




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