Let’s accelerate research together
At the end of 2014, Bernard Muller and Robbert Jan Stuit, two very entrepreneurial ALS patients, founded Patient organization ALS Patients Connected (APC). In order to ensure the continuity of the organization, both patients and non-patients became a member of the APC Board.
Our organization is independent and she puts the patient’s interests first. We will help patients with questions about ALS as much as possible or refer them to the right organizations. But our goals reach beyond this.
Knowledge and experience
The research on a medicine against ALS is getting closer and closer to a solution. Developments are accelerating and ALS disease has gained an international reputation. Especially now, it is important that organizations, who engage in ALS, make the right choices to enhance a fast development of a medicine. We need knowledge and experience. Knowledge and experience that we, being patients too, can offer because nobody knows our disease better than we do. This also appears from the questions that patient representatives receive. Another strong reason to speak up and to have a voice. This is how we can support and accelerate the most promising researches on a medicine against ALS.
It is evident that we don’t intend to compete with other initiatives related to ALS disease but we do want to give them advice. Therefore, our patient organization has established a Patient Advisory Board (PAR), who has an advisory role in making important decisions such as awarding grants for research. Based on this information, we make our best effort to make the right choices, both in terms of research and qualitative life support. We have this advisory role among others at Stichting ALS Nederland (Dutch ALS Foundation), who supports our organization because she finds it important that patients are represented independently. By asking the members of APC for their opinion, Stichting ALS Nederland can adjust their policy as needed. By uniting as patients, we are not only an equal discussion partner for Stichting ALS Nederland but also for ALS Centrum. In addition, we have ensured a collaboration between Universitair Medisch Centrum (UMC) Utrecht and Academisch Medisch Centrum Amsterdam (AMC). These parties have indicated that they need a direct representation of ALS patients. We also meet with physicians, researchers, pharmaceutical industry, fundraisers, politicians and other important players in terms of ALS.
The preferred position of impact is only feasible when we are united with many people. To enable us to represent you as an ALS patient the best we can and to remain a serious discussion partner, it requires our patient organization to have a sufficient number of members. Ultimately, every patient wants to survive or to make sure that in the future no one has to suffer from this horrifying disease. Become a member for free and make a contribution to a solution for ALS. As a member you will be frequently asked to give your opinion. Obviously, we will keep you informed on what we do with your opinion and input. Also we will inform you on the latest developments in our organization and ALS disease. We do this via a newsletter and social media like Facebook, Twitter and LinkedIn.
If you (or your representative) cannot or do not want to become a member, it is also possible to support us in another way, i.e., by making a donation or to do volunteer work for the organization. Either way, it will be much appreciated.