Public Policy in ALD/MND Care: The Belgian Perspective

Belgium has a population of 11 million people, which means that there should be 110–220 ALS cases per year and that there are 440 to 880 people living with ALS. There is no population-based national registry for ALS, but a national database for neuromuscular diseases exists. The multidisciplinary care for patients with ALS and their families is organized in neuromuscular reference centers. Most patients stay at home even in the terminal stages of the disease, thanks to a generous care budget which can be used by patients for home care. Euthanasia is legal in Belgium, and about 25 percent of patients with ALS are thought to plan their end of life this way, mostly at home in a terminal disease stage. ALS Liga Belgium is a very well-organized and active organization, which plays an important role in the care for patients living with ALS, in the public awareness of the disease, in fund raising for research and in defending the rights of ALS patients and their families.