Belgium Advances National Rare Disease Plan to Improve Diagnosis and Care

Belgium is implementing a new National Rare Disease Plan aimed at improving the diagnosis, treatment, and overall care for individuals living with rare diseases. The updated plan addresses gaps in the previous 2013 strategy, which was hampered by political restructuring and advancements in medical knowledge.

Mapping Expertise and Facilitating Access to Care

A central component of the new plan is the creation of a comprehensive map of expertise in rare diseases across Belgium. This will involve collecting data from the country’s eight rare disease reference hospitals, as well as other hospitals nationwide. The goal is to expedite access to accurate diagnoses and appropriate treatment. When specialized expertise isn’t available nationally – particularly for very rare conditions – the plan will facilitate access to European Reference Networks (ERNs) .

Addressing Gaps in Care and Coordination

Stefan Joris, president of the non-profit association RaDiOrg, which represents approximately 100 rare disease organizations, expressed support for the plan. He highlighted that many rare disease patients currently face delays in diagnosis and difficulties accessing multidisciplinary care. “Today, many rare disease patients are lost. They remain without diagnosis. If there is expertise relating to their illness, it is difficult to find and access to the necessary multidisciplinary care is very uneven. This Plan fills these gaps,” Joris stated.

Improving Multidisciplinary Care and Research Visibility

The plan emphasizes the importance of seamless coordination between specialized and primary care providers. It also aims to centralize and publicize all rare disease research initiatives conducted in Belgium, ensuring that research efforts are visible and accessible.

Reducing Administrative Barriers to Treatment

Recognizing the financial and logistical challenges associated with rare disease treatments, the plan seeks to reduce administrative obstacles to accessing medications and therapies. These treatments are often expensive and difficult to obtain, and complex administrative procedures can cause delays and negatively impact patients’ quality of life. The initiative aims to ensure faster and more equitable access to necessary treatments.

The Evolution of National Rare Disease Planning

Belgium’s initial Rare Disease Plan was established in 2013, following a 2009 European recommendation encouraging Member States to develop national strategies. However, a 2014 governmental restructuring transferred public health responsibilities to regional entities, creating confusion and rendering the first plan ineffective. The current plan reflects these political changes and incorporates recent medical advancements.