Patient organizations represent the interests of patients in the broadest sense of the word. Those involved are dedicated to improving the quality of the lives of people who have disorders and, to this end, support and information is provided to patients, their families and carers.
In addition, these organizations enable experiences to be shared with fellow sufferers and stand up for patients’ interests by actively lobbying for high-quality accessible healthcare.
We deem the commitment of patient organizations extremely important and are involved in their activities. In addition, we consider it vital to be transparent in this respect. It goes without saying that this cooperation is not intended to influence the policy of the patient organisations; moreover, the promotion of plasma-derived medicinal products is never the objective of our cooperation.
How do we cooperate?
Patient organizations believe it is important to be kept informed about developments in the provision of blood within the Netherlands; and also to be able to discuss these developments from the perspective of the patients and their treatments.
Consequently, we have periodic discussions with the executive boards of a number of patient organizations; in particular organisations representing patients with disorders which require them to be treated with blood-derived medicines their entire lives.
In addition, patient organizations often ask Sanquin Plasma Products to support their activities. These requests are assessed by Sanquin’s scientific department on the basis of principles provided by the CGR (Stichting Code Geneesmiddelenreclame).
Books about rare diseases and patient organizations
Here you can view the digital version of books about rare diseases and the position of patients (and their organizations). Click on the image of a book to download it as a pdf (in Dutch).