Advancing haemophilia care through shared knowledge and action

Over the past quarter, representatives of the haemophilia community in South Africa, facilitated by Roche, participated in three key engagements: the World Federation of Haemophilia (WFH) Congress, a Global Roche Haemophilia Belgium Preceptorship programme and the 2nd Roche Haemophilia Expert Forum. While each served a unique purpose, together they reflected a shared commitment to supporting healthcare professionals and strengthening haemophilia care in South Africa for patients and their families. Across all three engagements, a common thread emerged: the pursuit of better, more equitable care.

The WFH Congress gave South African healthcare professionals an opportunity to engage with global experts, emerging evidence and evolving approaches to haemophilia care. Beyond the scientific discussions, the congress reinforced the importance of translating global innovation into local impact. It provided a platform to share experiences, learn from international best practices and explore how advances in care can be applied within the South African healthcare landscape.​

That commitment to learning continued through the Haemophilia Belgium Preceptorship programme, which enabled healthcare professionals to gain practical insights from experienced international experts. More than an educational experience, the programme created space for knowledge exchange, reflection and professional growth. It highlighted the importance of ensuring that South African healthcare professionals are active contributors to, and practitioners of, international standards.

Reflecting on the importance of these engagements, Erika Koppers, the Disease Area Squad Lead Haemophilia, Southern Africa, noted: "The value of these initiatives is not just in the learning itself. It's about creating opportunities for people to connect, share experiences and take those insights back into their own healthcare environments where they can make a difference for patients."

Yet knowledge alone does not change outcomes. Real progress requires stakeholders to come together, align around shared priorities and take action. This was the focus of the 2nd Roche Haemophilia Expert Forum, which brought together healthcare professionals from across South Africa to discuss challenges, opportunities and practical ways to strengthen care. The event created a platform for open dialogue and reinforced the value of collaboration in addressing complex healthcare challenges.The engagement also highlighted the value of learning from diverse healthcare systems. Rather than looking at a single model, participants benefited from perspectives across both mature and developing healthcare environments. Professor Cedric Hermans from Belgium shared insights from a well-established haemophilia care system, while Dr Naglaa from Egypt demonstrated how innovation, collaboration and strategic partnerships can improve access within a low- and middle-income country context. Together, these perspectives reinforce that while healthcare systems may differ, many of the challenges are shared, and meaningful progress comes from adapting global learnings to local realities.

One of the most important themes to emerge from these discussions was the need for stronger local data and evidence to inform decision-making. Recognising this opportunity, Roche has been working alongside healthcare professionals and the National Department of Health (NDoH) to support the collection of meaningful real-world insights into haemophilia care in South Africa. By supporting the development of a simplified data collection tool, stakeholders are working together to build a clearer understanding of treatment patterns, patient outcomes and healthcare resource utilisation across the country. These insights can help identify gaps, inform future planning and support evidence-based decision-making that ultimately benefits patients. As Erika Koppers explains: "We developed a simple data collection tool together with healthcare professionals and handed it over to the National Department of Health. The goal is to generate local data that can help inform decision-making and ultimately support better outcomes for patients."

The initiative demonstrates what is possible when healthcare professionals, government and industry work towards a common objective. It also reflects a growing recognition that meaningful progress requires both innovation and evidence, ensuring that decisions are informed by the realities faced by patients and healthcare providers. However, one challenge continues to require collective attention: equity of care. "We don't have equity across sectors, and we don't have equity across provinces. Some patients are getting access to the care they need, while others are not. One of our biggest opportunities as a community is ensuring that where a patient lives does not determine the care they receive," says Erika Koppers. Her reflection highlights a reality that extends beyond haemophilia. Innovation alone is not enough. Sustainable progress requires strong partnerships, shared accountability and a commitment to addressing the barriers that prevent patients from accessing the care they need.​

Across the WFH Congress, the Haemophilia Belgium Preceptorship programme and the 2nd Roche Haemophilia Expert Forum, one message became increasingly clear: meaningful change happens when stakeholders work together. Healthcare professionals, patient organisations, government partners and industry each play an important role in creating a healthcare ecosystem that is more connected, informed and responsive to patient needs. 

This shared approach underscores the broader impact of these investments. Their true impact will be reflected in stronger healthcare partnerships, better-informed clinical decisions and improved experiences for people living with haemophilia and their families.

Throughout these engagements, Roche's role extended beyond convening conversations. Sustainable access requires alignment between those delivering care and those responsible for funding it. While clinicians focus on achieving the best possible outcomes for their patients, healthcare funders must ensure that limited resources are used responsibly and sustainably. 

Roche helps bridge this gap by bringing stakeholders together around a shared vision, supporting the generation of local evidence, navigating the complexities of the healthcare system and equipping healthcare professionals with the tools and insights needed to strengthen access. By connecting scientific innovation with real-world implementation, Roche contributes to building a healthcare ecosystem where better decisions can lead to more sustainable access for patients.

Looking ahead, the focus remains on maintaining the momentum created through these engagements and continuing to work collectively towards a shared goal. As Erika shared, "We managed to get everybody on the same bus and moving in the same direction. The opportunity now is to keep that momentum going and continue working together to create meaningful change for patients."