Edition of 23 May 2024

RaDiOrg, the Belgian umbrella association for people with rare diseases, recently published a memorandum containing policy proposals aimed at improving the futures of people affected by rare disease. The document was created in collaboration with RaDiOrg members and the Rare Diseases Working Group of the Belgian College of Human Genetics and Rare Diseases, of which the Sciensano Rare Disease Team is part.

The idea for this document stemmed from the fact that the current Belgian Plan for Rare Diseases dates from 2013. Since its publication, Belgium has undergone a governmental reform which has led to a change of responsibilities in the field of health policy. As a result, some of the actions described in the plan were difficult or impossible to achieve. With elections upcoming in 2024 and political parties preparing their campaigns, there is currently a window of opportunity to highlight the difficulties and shortcomings that remain.

The memorandum defines ten concrete proposals to prioritise in terms of rare diseases. The Sciensano Rare Diseases team, including Orphanet Belgium, contributed to the drafting of the memorandum, available in French and Dutch. The first action defined in this document is the importance of having prevalence figures for rare disease patients through increased data collection in the Central Registry for Rare Diseases hosted by Sciensano. The key role played by Orphanet is also mentioned, with proposals for new initiatives such as the establishment of a national information centre for people with questions on rare diseases to which the Orphanet Belgium team could contribute.

The memorandum was communicated to all Belgian political parties in February 2024. The reception was positive, and led to several meetings with representatives of various Belgian political movements and the office of the Minister of Health. On the occasion of Rare Disease Day 2024, the Minister of Health, Frank Vandenbroucke, officially announced to the House of Representatives that he was instructing the FPS Public Health to develop a new Belgian Rare Disease Plan, qualifying the memorandum as a beacon for this future project. This is encouraging news for all Belgian stakeholders involved in the field of rare diseases who have called for the development of an updated plan to consider the important developments that have occurred in the field.