Previously, ICORD provided an emphasis on rare diseases research through consideration of numerous research and regulatory issues, public policies, and guidelines related to the diagnosis and treatment of rare diseases, access to care, and orphan products development. These activities led to the publication of two reports. Recently, a call for global action for rare diseases in Africa, was published in January 2020(1). This followed publication in 2012 of the Yukiwariso Declaration, ‘The need for worldwide policy and action plans for rare diseases’(2). Individual members and ICORD continue to support the goals and mission of the International Rare Diseases Research Consortium (IRDiRC) and other organizations supporting an emphasis on rare diseases research and orphan product development and accompanying activities.
Hence, we would like to invite you to participate in a new initiative, bridging the Gaps on Rare Diseases and Orphan Products in Latin America and the Caribbean Nations and Territories (ERCAL).
- A call for global action for rare diseases in Africa. Nat Genet. 2020 Jan;52(1):21-26. doi: 10.1038/s41588-019-0552-2.
ICORD Link: 11th International Conference on Rare Diseases and Orphan Drugs, Cape Town South Africa.
Website Link: http://icord.es/past-events/icord-2016
- The need for worldwide policy and action plans for rare diseases. (Yukiwariso Declaration: http://www.icord.es/main-menu/yukiwariso)
International Conference for Rare Diseases and Orphan Drugs (ICORD).
Acta Paediatr. 2012 Aug;101(8):805-7. doi: 10.1111/j.1651-2227.2012.02705.x. Epub 2012 May 11. PMID: 22519914 Free PMC Article