Join the decision-making process in research
As a patient organization we want that the knowledge and experience of ALS patients is taken by entities and organizations who are involved in ALS. In the meantime we have succeeded to sit around the table with several important organizations to have our voice heard. We remain independent and unbiased at all times and put the patient’s interests first.
One of the organizations who values our input is Treeway. Robbert Jan Stuit and Bernard Muller, both entrepreneur and ALS patient, are its founders. Treeway’s aim is to develop a medicine against ALS as soon as possible. Currently, research is accelerating and the testing of an ALS inhibiting medicine is soon to start.
Meanwhile, APC is a discussion partner at the ALS Centrum too. Via Project MinE, the ALS Centrum is involved in research, which collects 22,500 DNA profiles for the largest international research for the genetic cause of ALS ever. Our input is highly valued.
One of our other partners is Stichting ALS Nederland. This foundation provides money for research on ALS and contributes to improve the quality of life and the patient care of ALS patients. As a patient organization we advise them through our patient advisory Board (PAR).
From our association we would like to delegate (more) representatives to other promising initiatives to enable us to properly represent the patient interests.