Creating an adapted local framework
Health system reform is undeniably challenging, especially in larger countries with geographical disparities and decentralized policymaking. Balancing the needs of rural and urban areas, as well as regional and local priorities, adds to the complexity. This is a key challenge faced by Castilla-La Mancha in Spain, as highlighted by María Peña Díaz Jara, head of social and health care and resources in Castilla-La Mancha’s health department, and Jorge Mestre-Ferrandiz, independent health economics consultant and associate professor at Universidad Carlos III de Madrid, who are involved in setting up the regional strategy.
In Castilla-La Mancha, the dispersed population makes holistic care provision and coordination particularly difficult. Díaz Jara has been using the tools to focus on the main challenges she feels “we must address” and has found Aspire4Rare instrumental in concentrating their efforts on the priorities identified by multidisciplinary working groups, which play a crucial role in setting objectives and action plans. As part of this work, the current situation was assessed and the tools adapted to their needs, as Mestre-Ferrandiz explains. “We identified 30 initiatives, 39 opportunities and 29 barriers, leading to five key areas and three enablers for our strategy, following validation with local stakeholders and experts. Aspire4Rare was an essential tool to help us reach this point.”
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Nearly half of the global population had elections in 2024, and the need for informed decision-making has never been more critical. As new leaders take office, they must be equipped with the knowledge and tools to drive impactful change.
Reflecting on her involvement in the rare disease plan at the Belgian health ministry, Quoidbach emphasises the importance of defining clear objectives and evaluation criteria. “This remains crucial,” she explains, “even as the EU has made significant strides in data, research and new regulations to promote the development of new medicines.” With the upcoming EU Health Technology Assessment and the Biotech Initiative on the horizon, new EU policymakers must be thoroughly informed. “Aspire4Rare offers a powerful solution, providing detailed evidence and information to support their decisions. By leveraging Aspire4Rare, policymakers can ensure that their strategies are grounded in the latest research and best practices, ultimately improving outcomes for the rare disease community.”
