Global Sickle Cell Disease Network, Programme for Global Paediatric Research, The Hospital for Sick Children, Toronto, Canada.
Am J Prev Med. 2011 Dec;41(6 Suppl 4):S417-21. doi: 10.1016/j.amepre.2011.09.019.
The First Global Congress on Sickle Cell Disease was held in Accra, Ghana, on July 20-23, 2010, to commemorate 100 years since the first published report of sickle cell disease (SCD). The idea of the Global Congress was conceived following the 2007 meeting in Nicosia, Cyprus, jointly organized by the WHO and the Thalassaemia International Federation (TIF), which recommended that groups working in SCD around the world needed to consolidate efforts into a stronger and more unified umbrella organization. The need for a united global effort received further endorsements at the 2009 International Symposium and Workshop held in Cotonou, Benin, and the 2009 inaugural commemoration of World Sickle Cell Disease Awareness Day, UN Headquarters, New York, New York. The overall goals of the Global Congress were to promote international cooperation and foster collaboration in advancing clinical care and furthering basic and applied research in SCD. Issues covered at the conference included health education, psychosocial needs, public health, medical care, research, program development, and development of international community-based organizations. The Congress participants included medical and research scientists, public health officials, community-based SCD organizations, other nongovernmental organizations, and people with SCD and their families. The Congress concluded with a call on patients and families affected by SCD, as well as advocacy groups, healthcare professionals, scientists, and national governments working to combat SCD to endorse the formation of the World Sickle Cell Disease Federation.
第一届镰状细胞病全球大会于 2010 年 7 月 20 日至 23 日在加纳的阿克拉举行,旨在纪念第一份镰状细胞病(SCD)报告发表 100 周年。全球大会的构想源于 2007 年在塞浦路斯尼科西亚举行的会议,该会议由世界卫生组织(WHO)和国际地中海贫血症联合会(TIF)联合组织,会议建议全世界从事 SCD 工作的组织需要将努力整合到一个更强大、更统一的伞式组织中。在贝宁科托努举行的 2009 年国际研讨会和讲习班以及 2009 年在纽约联合国总部举行的世界镰状细胞病意识日首次纪念活动上,对全球统一努力的需求得到了进一步认可。全球大会的总体目标是促进国际合作,促进临床护理的协作,并推进 SCD 的基础和应用研究。会议涵盖的问题包括健康教育、社会心理需求、公共卫生、医疗保健、研究、项目开发以及国际社区组织的发展。大会参与者包括医学和研究科学家、公共卫生官员、以社区为基础的 SCD 组织、其他非政府组织以及 SCD 患者及其家人。大会最后呼吁受 SCD 影响的患者及其家属以及倡导团体、医疗保健专业人员、科学家和国家政府共同努力抗击 SCD,支持成立世界镰状细胞病联合会。