ICORD 2012 Tokyo
East meets West at the 7th International Conference on Rare Diseases and Orphan Drugs
Japan hosted the 7th ICORD last February, organised by the Japanese Patient Association. The meeting, described as a global meeting on international cooperation and public health policies, focussed mainly on research, diagnosis, development of and access to treatment, and care for rare disease patients.
This year’s location had particular relevance as it becomes clear that the rare disease movement is gaining strength outside of Europe and the US. “The world is changing and rare disease and orphan drugs actors are actually emerging across the Pacific region”, comments Yann Le Cam, EURORDIS Chief Executive Officer present at the Conference. “The first signs of the crystallisation of an international rare disease community are very clear now.”
The event, which was originally scheduled to take place in May 2011, had to be postponed due to the terrible earthquake that shook Japan at the beginning of last year. The local organising committee, chaired by the Former President of the Science Council of Japan and made up of representatives of the Japanese Patient Association and the Support Network for Paediatric Rare Disease Patients, were not discouraged and managed to organise the meeting at the Komaba Research campus of the University of Tokyo in February of this year, also mobilising volunteer students.
Rewarding this determination, ICORD Tokyo 2012 attracted new faces and recorded an overall attendance of 250 participants from 20 countries, including several European countries, US, Canada, Argentina, Brazil, Australia, New Zealand and an important Asian contingent from Japan, China, Korea, Taiwan and Singapore. The conference underpinned efforts to raise visibility and activity in the region. Of particular significance was the attendance of the Japanese Minister of Health and high level representatives from public hospitals, academia and the Japanese Patient Association.
“For the second time this Congress has been held in regions where the topic is beginning to be relevant, and therefore constitutes for them an opening to the outside world and a mutual acceleration processes,” said ICORD’s new President, Dr Virgina Llera, who organised the previous Conference in Argentina as head of GEISER Foundation. “ICORD Tokyo has been the possibility to know the progress being made in Japan, but especially the start gate of a fluid exchange with Asia given the involvement of China and other Asian countries. A meaningful outcome in that it was possible to envision collaborative opportunities with Asian countries. In order to continue this process the next ICORD is going to be held in China.
The Conference, entitled “Connection + Collaboration = Creation”, lasted 3 days and was organized in 12 sessions, covering the following topics: Clinical Research in RDs, Access & Reimbursement for Diagnosis & Therapies, Regulatory Aspects of ODs, Supporting Product Development and Venture Capital, Value of & Promotion of Basic Research, International Health Policies for RDs & ODs, Patients’ Needs and Regional Pan-Pacific collaboration.
World opinion leaders in these areas participated in pre-congress round tables, including those specifically devoted to regulators, patient advocates and Asian stakeholders. These were followed by an intensive series of working sessions to exchange information about projects developed in emerging regions and the current progress made in pioneering countries.
Yann Le Cam representing EURORDIS, made a presentation on "Turning Rare Diseases into an International Public Health Priority and International Patient Movement". He stressed the importance of coordinating rare disease patient advocacy groups around the world, in order to enhance the international voice of people living with rare diseases and promote the cause of rare diseases.
He emphasized the need to share limited and reachable concrete objectives, such as to expand Rare Disease Day, to coordinate efforts to promote the Day for official status at WHO, to contribute to and adopt the Joint Declaration "Rare Diseases: the Challenges of an International Priority" and to create an informal Rare Diseases International network to be able to exchange information and experience and be able to speak with one strong international patient voice.
EURORDIS’ proposals received strong support from NORD, Japanese Patient Association, Taiwan Foundation for Rare Diseases, New Zealand Organisation for Rare Diseases, Korean Organisation for Rare Diseases and Chinese representatives.
Yann Le Cam also presented EURORDIS’ current actions to promote the Rare diseases research agenda as part of the session dealing with the future for international research collaboration. The presentation was very well received by the patient groups, NIH and Japanese and Chinese authorities present.
ICORD is a society of 61 individual members conceived to promote global collaboration in the field of rare diseases and orphan drugs. EURORDIS is a founding member. The first Conference was held in 2005 in Stockholm and subsequent meetings have taken place each year in Madrid, Brussels, Washington, Rome and Argentina.
Dr Domenica Taruscio was the President of ICORD for the last two years. Dr. Virginia Llera from Argentina has been newly elected as President and John Foreman from New Zealand will serve as the President-Elect for a two-year period succeeding Dr Llera.
Next rendez-vous in Shanghai, China, in October 2013!
More information at: http://icord.se
This article was first published in the April 2012 issue of the EURORDIS newsletter
Author: Paloma Tejada
Photo credits: © ICORD & EURORDIS