Participants migrate to Southern hemisphere for sixth International Conference on Rare Diseases and Orphan Drugs
The International Conference on Rare Diseases and Orphan Drugs (ICORD) crossed the equator for the first time to convene in Argentina in mid-March. Hosted by the Latin American and Caribbean countries patient organisation GEISER (learn more) the conference capitalised on the efforts already underway to raise visibility and activity in the region. ICORD is an annual event conceived to promote global collaboration in the field of rare diseases and orphan drugs. The first meeting was held in 2005 in Stockholm and subsequent meetings have taken place each year in Madrid, Brussels, Washington, and Rome. This year’s theme “Global Approaches to Research and Patient Access to Diagnosis, Information and Care, And the Common Issues with Neglected Diseases in Developing Countries” has particular relevance in the region. With sixteen formal sessions and five additional activities, some 350 participants hailing from over 25 different countries (including Australia, Brazil, Chile, China, Colombia, Ecuador, Japan, Mexico, Panama, Peru and Uruguay) were in attendance. One plenary session chaired by ICORD president Stephen Groft and Kerstin Westermark explored From Pioneer Countries to the Rest of the World; and another, chaired by Ségolène Aymé and Sharon Terry focused on The Development of Information. In addition, nine round table sessions featured topics such as Turning rare diseases into an international priority; Initiatives from the public institutions; Research; Patients and family care; Best practices in the approval of orphan products; Bioethics; Linking needs with neglected diseases; Strategies for accessibility; and International initiatives. Furthermore, several Working Groups gathered to explore Regulatory needs; Research; Patient/Family; Diagnosis; Accessibility; and other topics. A satellite symposium proposed by the Pan American Health Organization (PAHO/WHO) on The impact of high cost drugs in developing countries was also held. Other notable presentations included those by GEISER founder Virginia Llera on Including the Developing Countries in the International Scenario of Rare Diseases and Orphan Drugs; Orphanet director Ségolène Aymé on A Review of the International Classification of Diseases; and Tim Coté describing The FDA Foreign Offices and its Impact in the Orphan Drugs Field. A series of related courses were also on offer from the Latin American Society for Rare Disease Medical Research (SLADIMER). Significantly, the event was declared of national importance by the Argentinean Government, and was supported by the Pan American Health Organization as well as the local Embassies of the USA and Sweden, among others. These official connections related to rare diseases are unprecedented in the region. Tokyo, Japan has tentatively been proposed as the location for ICORD 2011 conference. Dr. Domenica Taruscio from Italy has been newly elected as president of the organisation and Dr. Virginia Llera from Argentina will serve as the President-Elect for a two-year period.