CKP (Contactgroep Kahler en Waldenström Patiënten)
The Dutch MM &WM Patient Association, the Netherlands (CKP) was founded in 1983, as an association for people with Multiple Myeloma and Waldenstöms’ disease.
The aim of the association is to support the interests of MM and WM patients through
- the organisation of patient support group meetings;
- the distribution of information about the diseases;
- patient advocacy and
- stimulation of research.
With more than 1600 members, 250 of whom are WM patients and approximately 900 are MM patients, the CKP is a volunteer organisation. The CKP has contacts with national and international patient organisations and medical cancer specialists to keep up to date on new treatment and clinical trials.
Patient advocacy is an important activity of CKP. In the Netherlands we focus at the moment on the availability of treatment and medication for all.
International patient advocacy is done via the European Myeloma Platform.
The CKP holds general meetings once a year with medical specialists reporting on the latest developments concerning MM and WM. Twice a year regional meetings are held in all 5 region’s of the Netherlands, giving patients a chance to hear guest speakers and exchange experiences which each other.
The CKP has a web-site, telephone contacts, a digital forum for different groups (including patients, partners, children of patients, patients under 55). The CKP publishes a quarterly magazine, a patient information book on MM and WM and an information leaflet on both diseases for health professionals. In addition the CKP participates with a booth at the appropriate information markets.
The CKP encourages research via a separately funded foundation. Topics of research at the moment are: the time span between symptoms and diagnosis of the disease (Doctors’delay) and the patients need for information.
In addition to direct membership contributions, the CKP receives funding from the Dutch government and from the Dutch Cancer Society.
Contact: ckp(at)kabelfoon.nl
Web-site: www.kahler.nl