McGlinchey Eimear, Fortea Juan, Vava Bulela, Andrews Yvette, Ranchod Kirti, Kleinhans Atholl
Global Brain Health Institute, Trinity College Dublin, Dublin, Ireland.
Trinity Centre for Ageing and Intellectual Disability, Trinity College Dublin, Dublin, Ireland.
Int J Equity Health. 2025 Jan 9;24(1):7. doi: 10.1186/s12939-024-02349-3.
Globally, individuals with Down syndrome (DS) face profound inequities in social and health care access. These challenges are further compounded by racial disparities as well as a lack of awareness, research, and support, particularly in the Global South. This commentary discusses the multifaceted challenges and disparities encountered by people with DS in South Africa, highlighting the need for targeted interventions. The paper will summarise the proceedings and outcomes of an imbizo-a strategic gathering of stakeholders in South Africa. This event brought together a diverse group from the DS community, including individuals with DS, their families, healthcare providers, non-profit organizations, and representatives from the Gauteng Department of Health. The discussions at the imbizo were organized into five key thematic areas: Advocacy and Awareness, Inclusion and Engagement, Education, Data and Research, and Networking and Collaboration. Additionally, the paper will underscore the critical need for the establishment of a dedicated DS research network in South Africa. Such a network is envisioned to foster collaboration, facilitate knowledge sharing, and ensure that research initiatives are closely aligned with the needs of the DS community. Overcoming these inequities requires a holistic approach that encompasses policy reforms and the crafting of inclusive services. In its concluding sections, the paper will explore future avenues for creating a sustainable framework aimed at addressing the multifaceted needs of the DS community in South Africa. This initiative represents an effort towards amplifying the well-being, rights, and inclusion of people with DS. Highlighting the necessity of a collaborative and multifaceted approach, this paper proposes a path towards a more inclusive society, advocating for the mitigation of challenges faced by this marginalized community.
在全球范围内，唐氏综合征（DS）患者在社会和医疗保健获取方面面临着严重的不平等。种族差异以及缺乏认识、研究和支持，使这些挑战在全球南方地区进一步加剧，尤其是在南非。本评论探讨了南非唐氏综合征患者所面临的多方面挑战和差异，强调了针对性干预措施的必要性。本文将总结南非利益相关者战略会议imbizo的议程和成果。该活动汇聚了唐氏综合征群体中的不同成员，包括唐氏综合征患者、他们的家人、医疗保健提供者、非营利组织以及豪登省卫生部的代表。imbizo的讨论分为五个关键主题领域：宣传与认识、包容与参与、教育、数据与研究以及网络与合作。此外，本文将强调在南非建立专门的唐氏综合征研究网络的迫切需求。这样一个网络旨在促进合作、便利知识共享，并确保研究计划与唐氏综合征群体的需求紧密结合。克服这些不平等需要一种全面的方法，包括政策改革和制定包容性服务。在结论部分，本文将探索未来的途径，以创建一个可持续的框架，旨在满足南非唐氏综合征群体的多方面需求。这一举措是为了提升唐氏综合征患者的福祉、权利和包容性。本文强调了合作和多方面方法的必要性，提出了一条通往更具包容性社会的道路，倡导减轻这个边缘化群体所面临的挑战。
