Skip to main content

ALS Liga Belgium

Patient organisation for people with Amyotrophic Lateral Sclerosis (ALS)

ALS Liga Belgium is a patient organisation for people with ALS, an incurable and lethal neuromuscular disease. The progressive illness is characterised by the selective dead of motor neurons in the brain and spinal cord. The loss of innervation to the muscles results in power loss and paralysis of the limbs. Also the respiratory, swallowing, chewing and speech muscles become affected. The intellectual capacity and senses are preserved, making the disease emotionally stressful and confronting for both the patient and the environment.

Activities

ALS Liga Belgium offers a diversified service.

Goals:

  • Informing ALS-patients and their family about all aspects of the disease
  • Providing psycho-social support to ALS-patients and their families
  • Renting out technical and logistic aid goods to support mobility and communication of ALS-patients
  • Aiming for custom care
  • Sensibilisation of the general public
  • Advocating the rights of ALS-patients at diverse organisations and the government
  • Having contacts with foreign organisations to collect and share information
  • Stimulating and financing scientific research on ALS
  • Organising symposia and contact moments at the national and international level

Target groups

ALS Liga Belgium offers its services to all Belgian patients with ALS and their families.

In Belgium, there are about 1.000 ALS-patients. Each year, more than 200 of them die and approximately the same amount of people is newly diagnosed. The average life expectation is only 3 to 5 years.

Projects

ALS Liga Belgium is coordinator of the Flanders' Care demonstration project 'Living Lab ALS Digitalk'

In this project, ALS-patients who encounter verbal and/or written communication problems are provided assistive communication technology. The optimal use of the communication devices is folowed up and adapted when needed. By this, the ALS-patient always has an apparatus at his/her disposal that fits best with the stage of the progressive disease. The impact of using assistive communication technology on the quality of life of the ALS-patients is measured as the primary outcome, with focus on breaking social isolation and prevention of depression.

Area of interest

Contacts/acquaintance, Cooperation, International projects, Projects in Flanders

ALS Liga Belgium is open to actors who develop innovative assistive technology and optimised care processes for patients with progressive neuromuscular disorders like ALS.
Humanitarian Award - 2011 - International Alliance of ALS/MND Associations
Honorary Degree - 2012 - Faculty of Social Sciences KULeuven and Trefpunt Zelfhulp
Flanders' Care label

Contact

ALS Liga Belgium

Campus St-Rafaël, building H, 4th floor; Kapucijnenvoer 33/1
Leuven 3000

http://www.ALSLIGA.be

Neem contact

Om contact op te nemen dien je hier eerst te registreren