Representing
The ALS Liga represents her patients. As an pressure group, she has only one goal: defending the rights of her patients in the most optimal way.
In the first instance, the Liga defends these rights with several authorities and the government. The dramatic character of the disease requires an adapted approach in which the specific needs of the patient must be taken in consideration. The ALS Liga points to structural shortcomings of administrative, financial, medical and social nature which have to be taken into consideration in Royal Orders, regulations and controls. The ALS Liga fights for ad hoc conventions and supplies for her patients.
In a second instance, the ALS Liga tries to confront the public with the fate of her patients. Through several channels, she wants to inform viewers, readers and listeners about the impact of ALS on a human’s life. Furthermore, she tries to expand her operation means by collecting funds through initiatives that draw the attention of the general public.
In a third instance, the ALS Liga is working on the demand for customised support and care by building and expanding the ALS care stay ‘Middelpunt’ in Middelkerke, where ALS patients can leave their environment for a while and lodge in optimal circumstances. It creates a holiday feeling and gives some breathing space to the caregivers. Afterwards, the customised care at home can be taken up with renewed energy. Back there, home care services, personal assistance budgets (PAB), tools and a social network play an important role.
To all responsible persons of a club, school or organisation who want to be informed about ALS.
If you want to organise an information moment about ALS, you can always call upon us. However, we will ask you for a contribution to the Liga of 125 euro, plus the mileage allowance of the speaker. This contribution will be used completely for the acquisition and the maintenance of the patient’s tools. We also want ALS to become widely known, because ignorance is often the biggest enemy. Nurses and nursing students will be informed when a patient applies for care. Every attendant will receive an ALS information package.
Are you interested? Please, contact the office as soon as possible, at least a month before the information moment.