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Update from the Canadian Organization for Rare Disorders (CORD) 2013 Fall Conference « Rare Disease Blogs.

Update from the Canadian Organization for Rare Disorders (CORD) 2013 Fall Conference « Rare Disease Blogs.

International opinion on rare diseases and orphan drugs
Exciting times at the Canadian Organization for Rare Disorders Fall Conference as key policies move forward!
Rare Disease Blogs

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.

About the author

Chief Executive Officer, EURORDIS (Rare Diseases Europe)
Yann Le Cam is a patients’ association advocate who has dedicated 25 years of professional and personal commitment to health and medical research non governmental organisations in France, Europe and the United States in the fields of cancer, HIV/AIDS and rare diseases. He has three daughters, the eldest of whom has cystic fibrosis. Yann is one of the founders of EURORDIS in 1996-1997 and its Chief Executive Officer since 2002. He is the Vice Chairman of the EU Committee of Experts on Rare Diseases since 2011. He was one of the first patient representatives appointed to the Committee for Orphan Medicinal Products (COMP) at the European Drug Agency (EMA) where he served 9 years and was its Vice Chairman for 6 years. He served on the Management Board and Executive Committee of the French HTA agency ANAES now called HAS for 5 years, on the DIA Advisory Committee Europe for 3 years, on the EPPOSI Board for 6 years. Yann is one of the founding members of the International Alliance of Patients Organisations (IAPO).

Update from the Canadian Organization for Rare Disorders (CORD) 2013 Fall Conference « Rare Disease Blogs.

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