The purpose of the Rare Diseases Conference that took place in South Africa last month was to provide a global forum for all stakeholders within the rare diseases field to participate in open discussion, enhance models of best practice and share specialist knowledge around rare diseases and orphan drugs. Incorporating the annual International Conference on Rare Diseases and Orphan Drugs (ICORD) for 2016, RareX had an extended programme, to incorporate patients, their families and caregivers as well as support groups and minority groups within the rare disease community.
The conference included presentations from members of rare disease organisations all around the world, including the Canadian Organisation for Rare Diseases (CORD), the New Zealand Organisation for Rare Disorders (NZORD) and the International Rare Diseases Research Consortium (IRDiRC). Presentations were given on global rare disease policy, diagnostics, congenital malformation, access to treatment, research and patient organisations.
Also during the conference, the African Alliance for Rare Diseases was launched, with its future patient charter being developed on-site. The African Alliance aims to be a common voice to advocate and address the lack of prevention, delayed diagnosis and lack of reliable diagnostics resulting in diminished access to treatment and supportive care for rare disease patients in Africa. The conference proved to be very useful in forwarding the rare disease agenda in South Africa and across the African continent and will hopefully be just the start of rare disease dialogue in Africa.