Belgium’s federal government is proposing a latest national plan for rare diseases, aiming to address diagnostic delays and improve access to specialized care. The initiative comes after the country’s first plan, launched in 2013, was largely rendered ineffective by a 2014 governmental restructuring that devolved some public health competencies to regional authorities.
The new plan prioritizes a nationwide mapping of expertise in rare diseases. Data will be collected from Belgium’s eight designated reference hospitals for rare diseases, and subsequently from other hospitals across the country. Officials hope this mapping will accelerate diagnosis and treatment pathways. When specialized expertise isn’t available nationally – particularly for very rare conditions – the plan seeks to streamline patient and expert access to European Reference Networks (ERN).
Stefan Joris, president of RaDiOrg, an association representing approximately one hundred rare disease organizations in Belgium, welcomed the proposed plan. “Today, many patients with a rare disease are lost. They remain undiagnosed,” Joris stated. “If expertise related to their condition exists, it is difficult to identify, and access to the necessary multidisciplinary care is very unequal. This Plan addresses these gaps.”
A key component of the plan is improved coordination of multidisciplinary care for patients, bridging the gap between specialized services and primary care physicians. The government similarly intends to create a centralized, publicly accessible database of all rare disease research initiatives currently underway in Belgium, aiming to maximize the impact of research efforts.
The plan also addresses administrative hurdles that often impede access to treatments for rare diseases, which can be both costly and difficult to obtain. The government aims to expedite and equalize access to medications and therapies by simplifying administrative procedures, acknowledging the significant impact these delays have on patients’ quality of life.
The European Council adopted a Recommendation in June 2009, supporting the adoption of national plans and strategies for responding to rare diseases before 2013. This recommendation encouraged Member States to establish plans ensuring patients have access to high-quality care, including diagnostics, treatments, and rehabilitation. The EUROPLAN project, funded under the Community public health programme 2003-2008, developed recommendations and best practices for defining strategic plans for rare diseases.
As of December 2023, a joint report by the French Haut Conseil de la Santé Publique (HCSP) and the Haut Conseil de l’Évaluation de la Recherche et de l’Enseignement Supérieur (HCERES) evaluated Belgium’s third national plan for rare diseases (2018-2023), noting significant investment but also highlighting the need to address ongoing limitations and emerging challenges.
