External projects

Our organization participates in projects of other organizations. Today, we participate in the following projects:

  1. Innovation through participation. This project is implemented by the Association of Working Parents and Patient Organizations (VSOP) and aims to promote the innovative impact of patient and disability organizations for rare diseases on policy, quality and research and creating the conditions necessary for that purpose. This is developed in three parts: "Having heard, seen and known" concerning participation in policy; 'care from 1.0 to 2.0 concern "regarding participation in quality improvement and quality and' Partner in perspective on participation in research. The subprojects include both activities focused on common interests and disease related activities that are more focused on the issues of the supporters of the project partner. The three-year project 29 project partners with the VSOP as main contractor.


Internal projects

Within our organisation we are active with a new project 'new patients!'.

Our project objectives are:

  1. Making people aware of vascular malformations such as CMTC ('Van Lohuizen syndrome'). Our ambition is the reason why we want to make people aware who are suffering from vascular malformations, and who are not aware about this, where they are suffering from and where they can get medical treatment and support.
  2. Informing doctors and other medical professionals about vascular malformations in order to perform a proper diagnosis.
  3. Reaching out to children and young adults to inform them about vascular malformations and to confront them with experiences and stories of companions.

To achieve these objectives our organisation needs to have better communication facilities such as:

  1. Translation of the special kids kinderwebsite to other languages such as French, German and Spanish (currently available in Dutch and English).
  2. Subtitles of a number of video films.
  3. New folders and information material.
  4. Upgrading the current website.