CML Advocates Network

CONTACT INFORMATION:

Deutsche Leukaemie- und Lymphom-Hilfe e.V.
Thomas-Mann-Str. 40
D-53111 Bonn
Germany

Telephone: +49-228-33 88 9 200
Facsimile: +49-228-33 88 9 222
Email: info@leukaemie-hilfe.de
Website: www.leukaemie-hilfe.de

KEY CONTACTS:

Ralf Rambach, Chairman
Anita Waldmann, honorary chair
Ulrike Holtkamp, Patients’ advocate

ORGANIZATIONAL OBJECTIVES:

Help, Information, Advocacy

BRIEF DESCRIPTION OF ORGANIZATION:

Umbrella organization of German-speaking support groups for adult patients with leukemia, lymphoma, myeloma and other rare diseases of the blood and bone marrow

AUDIENCE/CONSTITUENCY:

Adult patients with leukemia, lymphoma, myeloma and other rare diseases of the blood and bone marrow, family members, friends, support group leaders, journalists, media, physicians

NUMBER OF MEMBERS:

83 self support groups, 3 pharmaceutical companies, 2 hospitals, about 200 passive members

COUNTRIES WITH A SIGNIFICANT MEMBERSHIP BASE:

Germany, Switzerland, Austria, Belgium

WAYS OF COMMUNICATING WITH CONSTITUENCY:

DLH-INFO (printed magazine, 3 times per year)
Email-Newsletter for member organizations
Training Seminars for support group leaders, Annual General Meeting, Educational Seminars, Congresses, Website

KEY PROGRAMS:

Brochures, Educational Seminars, Federal Patients’ Congresses, Patient Hotline, Support of support groups, Advocacy, PR