Our organization is a professional organization and we work continuously to promote professional development. We want to achieve an even higher level not only for our organization but also the context in which we operate. The world around us is changing at a rapid pace, the only constant is change, and as an organization we are going along.

Please note that this is a snapshot. This page is regularly updated.

Why professional development?

  1. Improving efficiency and effectiveness. All activities are carried out by volunteers in their limited free time. This implies that they want to carry out their work efficiently and effectively.
  2. Both the US Department of State, currently our biggest sponsor, as potential sponsors require their contribution is spent effectively. Year after year our external auditor calculates how much money we spend on our objective, this is reflected in our annual report and annual accounts, so that we can show to how effectively we work.
  3. Rare diseases requires cooperation and in particular with organzations that include Eurordis, Genetic Alliance and major international organizations such as NORD. These are professional organizations so that cooperation with such organizations also demands on the other party.
  4. We want to expand and improve the services to our members.
  5. Professionalism creates trust to all stakeholders and sponsors.
  6. Members for example, require that up-to-date information that is always available on both tablets, smartphones, and computer screens. For example, hardly maintained, information websites that update once a month, are not reliable and says something about the activity (or actually lack of activity) of the organization.
  7. Members want to ask questions and demand a response time of about a day and do not accept response times of a week. Why do we have the phone on within 10 seconds and we react on eg. email after a week? This is not acceptable, for example, in our view, especially when it comes to a medical problem. Possibly, we cannot give an answer immediately but we know that we have seen it and that we get to work.


What we have already achieved?

  1. Policy plan. We are in the year 2005. The policy plan shall cover a period of 3 years. We have published a new version.
  2. Information leaflets in 14 languages.
  3. Contributor directory in Dutch and English.
  4. Posters in Dutch and English.
  5. Script of Netherlands membership meeting.
  6. Script Familyday.
  7. Member and donor records through the website.
  8. Webshop in which the user can see when he/she has bought/paid and for what.
  9. Payment via PayPal, crediat card, etc.
  10. Complaints procedure and Complaints Committee.
  11. Procedure Manual.
  12. Volunteer Handbook.
  13. Internal code of conduct.
  14. Social media plan and implementation (such as Twitter, Facebook page and group, LinkedIn page).
  15. Profile descriptions of all roles within our organization.
  16. Developing a website for children between the ages of about 8 and 15 years.
  17. Website extended with psychology section.
  18. Website extended with with Other Vascular Malformations (text and photos).
  19. Option to automatically, via email, to be informed about news.
  20. Add to webshop CMTC-OVM-specific articles.


What are we going to still realize?

  1. Website restructuring.
  2. Website improvement for using different devices (tablet, smartphone and computer display).
  3. Customers expand with personal stories.