The 11th Annual ICORD Meeting, 19-22 October 2016
The 11th annual ICORD meeting was a successful event taking place as part of RareX in Cape Town, South Africa, 19-22 October 2016. The meeting attracted 200 attendees from 27 countries, representing all stakeholders within the rare disease field, both from South Africa and abroad, with the aim to participate in open discussion, enhance models of best practice and share specialist knowledge around rare diseases and orphan drugs. ICORD wishes to acknowledge and thank its local partners in contributing to the success of the meeting. Many thanks to Rare Disease South Africa for its great work and commitment and to African Agenda for taking care of all the logistics very professionally! ICORD also wishes to acknowledge Rare Disease International for its support in the programme planning and patient groups’ attendance. In addition, ICORD is very grateful to the sponsors (Audentes Therapeutics, Celgene, CSL Behring, Equity Pharmaceuticals, Genzyme – a SANOFI company, Iconnect Telecoms, Marken, Medages, Perkin Elmer, Pfizer and Swedish Orphan Biovitrum – sobi) as well as the extraordinary contribution of the speakers and session chairs!
The ICORD conference offered a wide range of sessions with exceptional speakers on diagnostics, congenital malformations, access to treatment, global RD policies and programmes, research, quality of life and empowerment of patient support groups. Furthermore, the participants got the opportunity to network in smaller discussion groups and in a poster session.
ICORD is delighted and thankful by the written statement from UNDP Administrator Helen Clark, which provided a great opening of the ICORD meeting. ICORD also expresses its gratitude to South African Director General of Health, Ms MP Matsoso, for the opening speech and the closing words of Benjamin Djoudalbaye, African Union Commission, Ethiopia and looks forward to future development and commitment for rare diseases in South Africa and Africa.
During the conference the African Alliance for Rare Diseases was launched. The Alliance, which is a Rare Disease South Africa initiative, aims to bring all umbrella rare disease patient organisations in Africa into one community. The vision is to be a common voice to advocate for and address the lack of prevention, delayed diagnosis as well as the lack of reliable diagnostics, diminished access to treatment and lack of supportive care for rare disease patients in Africa.