Rare Diseases Conference 2016 featuring the 11th ICORD Annual Meeting

Rare Diseases Conference 2016 featuring the 11th ICORD Annual Meeting

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.



 
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseases, Rare Diseases International is a EURORDIS initiativeRare Disease International Bringing together patients, families and experts to share experiences in a moderated multilanguage forum, RareConnect is a EURORDIS initiative RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.European Conference on Rare Diseases An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases