Belgium is facing an outbreak of Monkeypox virus. This illness was until now only endemic in West and Central Africa. Since May 2022, an exponential growth of new cases has been recorded in Europe. The clinical presentation is an influenza-like illness followed by a varioliform rash. Most patients will have mild to moderate symptoms but immunocompromised people, children and pregnant women can develop a severe illness. Mortality is low (3-10%) depending on the viral strain. The virus is transmitted mainly by prolonged skin contact and to a lesser extent by air (droplets). It is essential to implement preventive measures now (rapid screening, isolation of confirmed cases and high-risk contacts, public awareness) in order to contain this outbreak. A live attenuated vaccine (Imvanex®), currently not very available, could be used for post-exposure prophylaxis of contact cases and to a greater extent, for pre-exposure prevention. Antiviral treatments (Brincidofovir and Tecorivimat) will also be available in the near future.

Approximately 7,000 rare diseases, defined by their prevalence of less than 5 per 10,000 in the community, have been identified. These diseases, most often of genetic origin, collectively affect 5-8% of the European population, or 25-30 million people. In Belgium, it is estimated that around 700,000 people have a rare disease, with often severe clinical, social and economic consequences. The diagnosis and management of rare diseases requires a concentration of expertise in highly specialised centres, working in concert with hospital networks and health professionals. Within Cliniques universitaires Saint-Luc (CUSL), the Institute of Rare Diseases (IMR) coordinates some thirty centres of reference for rare diseases, involving more than 15,000 patients and 300 health professionals. Fifteen of the CUSL centres are part of the European Reference Networks (ERNs), officially validated and supported by the European Community. Patients and their treating physicians often find themselves at a loss when faced with rare diseases and the difficulties they entail. The setting up of multidisciplinary networks bringing together a critical mass of medical, biological and technical expertise and the recruitment of a sufficient number of patients are essential to optimise the management of these diseases. One of the key missions of the CUSL Rare Disease Institute is to establish an information and support programme for patients, their families and health professionals. It is within this framework that the RMI organised a symposium on Friday 3 June 2002 on the theme of innovation in the field of rare diseases. Speakers from Belgian and foreign centres covered a wide interdisciplinary field, from basic research to clinical practice, genetics, therapeutic innovation, drug repositioning, the use of artificial intelligence and medical data, as well as ethical and economic aspects and, of course, the views and expectations of patients. As you will read in the following pages, the presentations of this symposium have shown a tremendous momentum in the holistic management of rare diseases. This momentum is irreversible and is part of the global awareness of the medical and societal importance of these diseases.