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.
How:
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.