CML Support Groups: Members of the CML Advocates Network
The CML Advocates Network connects patient organisations supporting patients and families affected with Chronic Myeloid Leukemia (CML)
If your group is not listed here, please register. If details have changed, please contact us.
CML Patient Organisations
Hungary: CML-GIST Betegek Egyesülete
CONTACT INFORMATION:
Mailing/Postal Address:
6800 Hódmezővásárhely
Hódi Pál u. 1. II. lph. fsz. 1.
Hungary
cmlgist@cmlgist.hu
Telephone: 00 36 309401600
Website: www.cmlgist.hu
KEY CONTACT:
C Konzept Advertising Agency
Communication Partner of the association
ORGANIZATIONAL OBJECTIVES:
- To raise awareness about CML and GIST
- To provide information on the treatment options in CML and GIST
- To raise awareness about the problems and needs of these small patient groups
- To address the problems of the patients, and help find solutions
- To represent the interests of CML and GIST patients
BRIEF DESCRIPTION OF ORGANIZATION:
CML-GIST Patients Association was founded in 2002 by 10 CML patients. The reason for forming a patient group was to be able to share information on the treatment, on the side effects, and above all, not to be alone with the disease and with the fears of the unknown.
AUDIENCE/CONSTITUENCY:
patients, family-members, caregivers, MDs
NUMBER OF MEMBERS:
about 200-250 (by May 2015)
COUNTRIES IN WHICH ORGANIZATION HAS A SIGNIFICANT MEMBERSHIP BASE:
Hungary
WAYS OF COMMUNICATING WITH CONSTITUENCY:
Association event once per year (együtt lét nap)
Website, newsletter, meetings, mails, published book
KEY PROGRAMS:
- Recruit patients, made a starting package
- Support local patient groups- organize more meetings over the country
- Keeping contact with decision makers of health government
- Preparation for the introduction of generics
- Inform the patients about the stop trials conditions
- Contents and importanc of molecular tests
