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Mission, vision, strategies and goals

What we strive to: our vision

  • Every human being has a right to be alive;
  • We are here for every human being that needs us;
  • We protect the integrity of our members;
  • We protect the rights and needs of our members regarding studies and scientific progress on HCHWA-D.

What we stand for: our mission

  • We want to be contribute to the quality of life of everyone that deals with HCHWA-D;
  • We want to supply the right information to people to eliminate false beliefs about the disease and to stimulate compassion for the consequences of it;
  • We stimulate the finding of a cure.

We focus on four kinds of people:

  • The potential patient. Our goal is to inform and support them.
  • The patient and his/her family members and/or caregivers. They usually experience many consequences of the disease mentally and physically. Our goal is to help them deal with these and reduce negative consequences as far as possible.
  • The healthcare system. We have an advisory role in optimizing healthcare programs organised by third parties.
  • Society. We focusing on providing proper information about the disease to others and create support for people dealing with HCHWA-D.


  • We organise possibilities for our members to offer support to one another, at least four times a year.
  • At least twice a year we invite experts in different areas during a  ‘theme-night’: researchers, healthcare professionals, insurance experts, etcetera.
  • We give presentations about HCHWA-D to healthcare professionals and others who might encounter our base.
  • We keep track of developments and inform our members and others.
  • Our website is a source of information for members and non-members.
  • Through our CareCenter anyone with a question can contact us.
  • We can help connect you to the right third party if necessary.
  • We ‘translate’ research developments to make them understandable for everyone.
  • We work together closely with the LUMC, the Dutch CAA Foundation, local healthcare institutions and other parties associated with the disease.