Organization and policy APC

 

The Board

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.

 

Shared views

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.

 

Compensation policy

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.

 

Activities

See newsletters at Nieuws.

 

ALS Patients Connected has obtained the ANBI status.

 

Stay informed about our association and the recent developments with respect to ALS and register for our newsletter.






Your email (mandatory)

Become a member now!
Make a contribution to a solution against ALS