BLOGS DE ENFERMEDADES RARAS
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November 8th, 2013
Update from the Canadian Organization for Rare Disorders (CORD) 2013 Fall Conference
I recently had the privilege to represent EURORDIS at the Canadian Organization for Rare Disorders (CORD) 2013 Fall Conference, the equivalent to our own annual EURORDIS Membership Meeting.
I attended this meeting at the time when CORD is driving forward their advocacy efforts for a Canadian (Federal) regulatory framework on orphan medicines. Canada is close to having a Canadian regulatory framework for orphan medicines. The legislative text is ready but it is not yet known when Health Canada will adopt it.
The CORD Fall Conference was also the first opportunity to discuss a Canadian plan for rare diseases. To date, CORD has focused their advocacy efforts primarily on orphan medicines. As Canada does not have a significant pharma or biotech industry, the primary issue is access to orphan medicines, (rather than development of treatments). Thus, emphasis has been on accessing treatments and our Canadian friends are now beginning the journey to develop, adopt and implement a rare disease plan, using the European approach as their model. The EU Council Recommendation, the EURORDIS-EUROPLAN methodology, the EUCERD Recommendations, and specific EU country national plans are the triggers for new developments in Canada. In this dynamic, EURORDIS is providing the strategic approach, the blueprint for content, and feedback from real-life experiences from different Member States.
EURORDIS has long supported the efforts of CORD to develop its national alliance by empowering Canadian RD patient groups to join forces for advocacy purposes. Canada has some strong RD patient groups and they are starting to come together to speak with one united rare disease voice.
Providing advice and support to promote rare disease and orphan medicine policies in Canada, interacting with CORD via our presence in the COMP, IRDiRC, the ECRD and other initiatives, reflect the commitment to work together on behalf of people living with a rare disease that was forged through the EURORDIS-CORD Partnership Memorandum of Understanding signed in January 2013.
About the CORD 2013 Fall Conference
About 100 participants attended the two-day CORD Fall Conference on 29-30 September and speakers included national competent authorities, researchers, company executives and patient advocates. Amongst the topics covered were regulatory policies in place for orphan medicines and other rare disease treatments (including priority review for fast tracking new products; special access for medicines not yet authorised; the Health Canada Clinical Trials database; and more). Other speakers presented an overview of gene therapy; newborn screening (in Canada each province decides which conditions will be screened); social media; the experience of rare diseases in Canada for patients, clinicians and researchers. Small group sessions were held on key topics: Regulatory & Access environment for Therapies; Research on Rare Diseases; Centres of Expertise and Reference Networks; Access to Health Care and support Services; and Empowerment of Patient Organisations.
Interestingly, some ongoing innovative policy initiatives in the EU to improve access to medicines, such as the Mechanism of Coordinated Access to Orphan Medicinal Products (MoCA) were inspired by the experience of Canada in establishing a mechanism for pan-Canadian negotiation between volunteering provinces on the price and volume of vaccines in order to optimise their negotiation capacities.
I attended this meeting at the time when CORD is driving forward their advocacy efforts for a Canadian (Federal) regulatory framework on orphan medicines. Canada is close to having a Canadian regulatory framework for orphan medicines. The legislative text is ready but it is not yet known when Health Canada will adopt it.
The CORD Fall Conference was also the first opportunity to discuss a Canadian plan for rare diseases. To date, CORD has focused their advocacy efforts primarily on orphan medicines. As Canada does not have a significant pharma or biotech industry, the primary issue is access to orphan medicines, (rather than development of treatments). Thus, emphasis has been on accessing treatments and our Canadian friends are now beginning the journey to develop, adopt and implement a rare disease plan, using the European approach as their model. The EU Council Recommendation, the EURORDIS-EUROPLAN methodology, the EUCERD Recommendations, and specific EU country national plans are the triggers for new developments in Canada. In this dynamic, EURORDIS is providing the strategic approach, the blueprint for content, and feedback from real-life experiences from different Member States.
EURORDIS has long supported the efforts of CORD to develop its national alliance by empowering Canadian RD patient groups to join forces for advocacy purposes. Canada has some strong RD patient groups and they are starting to come together to speak with one united rare disease voice.
Providing advice and support to promote rare disease and orphan medicine policies in Canada, interacting with CORD via our presence in the COMP, IRDiRC, the ECRD and other initiatives, reflect the commitment to work together on behalf of people living with a rare disease that was forged through the EURORDIS-CORD Partnership Memorandum of Understanding signed in January 2013.
About the CORD 2013 Fall Conference
About 100 participants attended the two-day CORD Fall Conference on 29-30 September and speakers included national competent authorities, researchers, company executives and patient advocates. Amongst the topics covered were regulatory policies in place for orphan medicines and other rare disease treatments (including priority review for fast tracking new products; special access for medicines not yet authorised; the Health Canada Clinical Trials database; and more). Other speakers presented an overview of gene therapy; newborn screening (in Canada each province decides which conditions will be screened); social media; the experience of rare diseases in Canada for patients, clinicians and researchers. Small group sessions were held on key topics: Regulatory & Access environment for Therapies; Research on Rare Diseases; Centres of Expertise and Reference Networks; Access to Health Care and support Services; and Empowerment of Patient Organisations.
Interestingly, some ongoing innovative policy initiatives in the EU to improve access to medicines, such as the Mechanism of Coordinated Access to Orphan Medicinal Products (MoCA) were inspired by the experience of Canada in establishing a mechanism for pan-Canadian negotiation between volunteering provinces on the price and volume of vaccines in order to optimise their negotiation capacities.
About the author
Read his/her other articles
- Update from the Canadian Organization for Rare Disorders (CORD) 2013 Fall Conference
- Data Protection Lunch Debate: 26 September 2013
- On the occasion of the DIA President’s Award for Outstanding Achievement in World Health
- Rare Disease Day 2013 Improving patients’ access to orphan medicinal products in Europe based on increased EU coordination
- Sept 21, 2012: EURORDIS intervention at Dutch Healthcare Insurance Board public hearing
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