Organization and policy APC
Matthijs Veenema, Chairman
Jan Kramer, Vice-Chairman
Ruud Kolijn, Treasurer
Theo Meister, General Board member
Conny van der Meijden, Secretary
Strategy and policy
The main goal is clear: we would like to unite patients to make a contribution to ALS, PSMA and PLS disease wherever we can.
Independent patient organization for ALS/PSMA/PLS patients
The organization is a formally independent organization with members. The members are ALS, PLS and PSMA patients or their representatives, regardless of nationality.
In order to work towards our goal, we have strong working relationships with relevant organizations and entities, such as:
- Stichting ALS Nederland
- ALS Centrum Nederland
- Spierziekten Nederland
- Regionale vrijwilligersinitiatieven
Representing patients in organizations
In order to find a solution for ALS, we need companies / organizations who want to invest. Think Treeway, research centers etc. The organization makes a contribution through the participation of patients to these organizations and where possible she tries to influence in a useful way. This requires:
- a good and formally secured collaboration with organizations as mentioned above. It is of importance that there can never be competition but always a shared interest. A sparring partner is important for any initiative.
- a delegation (and appointment) of a representative of the organization in e.g., the Board of Directors, Supervisory Board or Patient Advisory Board.
- a proper set-up of the communication with the members of the organization.
In order to represent patients, it should be clear what are the opinions of a group of patients has. It requires:
- A simple way of communicating and gauging opinions;
- Working groups for different topics;
- Occasions to meet each other and to discuss matters.
ALS Patients Connected is a not-for-profit organization. This is evidenced from the fact that the organization reinvests the revenues from activities in her organization. The Board works on a voluntary basis.
For services, initiated by the organization, is charged a normal market remuneration.
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ALS Patients Connected has obtained the ANBI status.