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Celebrating the Patients, Carers, Advocates, Healthcare Leaders, and Researchers at the Forefront of Sickle Cell Disease Care and Innovation
Earlier today, our team at Sanius Health published this year’s Top 80 Most Influential People in Sickle Cell Disease (SCD) – a chronicle of the extraordinary individuals and organisations driving change and advancing care for this condition.
As a testament to the resilience, compassion, and innovation of individuals shaping the future of SCD care and improving quality of life worldwide, this year’s list honours those who are truly advancing equitable care, driving groundbreaking research, and empowering the community.
From patient advocates and carers, to leading researchers and clinicians, these individuals have been instrumental in driving change and reshaping the landscape for SCD. Across areas such as Social Impact, Awareness, Healthcare Leadership, and Research, we are proud to shine a spotlight on some of their key achievements this year. Be these pioneers whose work spans curative therapies, enhanced care delivery, or community empowerment, their contributions are the backbone of progress in a space where longstanding challenges for patients have remained.
Indeed, patients, carers, and advocates remain central to these advancements. Individuals including Jenica Leah, a leading UK SCD ambassador and award-winning author who continues to inspire with her empowering books on SCD, and Samira Haruna Sanusi, whose foundation provides critical support to patients in underserved regions, are redefining perceptions of what it means to live with this disease while accelerating its destigmatisation. In parallel, raising visibility across new mediums has played a core part in opening the eyes of many who may previously not even have heard of SCD – Rapman’s groundbreaking Netflix series Supacell having transformed public perceptions by centring the condition in its storyline.
At a clinical level, healthcare leaders such as Dr Sanne Lugthart and Professor Bola Owolabi are at the forefront of transforming patient care. From integrating advanced treatments like CRISPR-based gene therapies into clinical practice to establishing patient-first care models that prioritise staying well at home, these pioneers are creating systems of care that place the patient experience and wider wellbeing at their core. Similarly, Dr Cece Calhoun is leading efforts to address systemic disparities in SCD care, championing holistic approaches that tackle both medical needs and social inequities, ensuring patients receive comprehensive and equitable support.
Globally, the community is similarly beginning to witness some critical and transformative progress, driven by leaders such as Dr Jane Ruth Aceng Ocero, Uganda’s Minister of Health. Her leadership has truly been pivotal – launching Uganda’s first national sickle cell screening programme and enabling early diagnosis for interventions that are in turn improving patient outcomes through a shift to preventative pathways. By integrating SCD care into the broader healthcare system, ensuring access to essential diagnostic tools and medications, and fostering partnerships with global health organisations such as the WHO, Dr Aceng’s work has made her a core beacon of hope for those across the global SCD community.
Finally, researchers and innovators continue to push the boundaries of what is possible. Figures like Dr Marsha Treadwell and Dr Rossby Awadzi are leading cutting-edge studies that pave the way for curative therapies and improved quality of life, including the advancement of digital health solutions to investigate new gene-based approaches and pioneering research that serves as a vital bridge to a future of greater patient access to care and innovation. Furthermore, researchers such as Dr Wally Smith, focusing on pain management and health equity, and Dr Betty Pace, advancing paediatric treatment approaches, exemplify the breadth of innovation driving progress.
As we highlight these achievements, it remains important to remember that none of this would be possible without the unwavering commitment of nursing, support, and haematology teams. From offering comfort and compassion during crises to driving vital innovations in treatment, their efforts sit at the heart of transforming lives. Ultimately, this list represents more than simply a celebration of individuals; it is an important reflection of the collective action and progress being made across disciplines for the benefit of the global SCD community.
For anyone interested in learning more about what is currently being done across the landscape by some of SCD’s most inspirational advocates, we welcome you to download the full release here and honour these incredible achievements together.
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