Czech Republic: Diagnoza CML

Member’s description

Diagnoza leukemie is a patient-governed society building on the experience of a CML support organization (2006-2014) when it has expanded into the broader scope of blood cancers (all leukemias, MDS, MPN). Independent source of disease-related information through collaboration with medical study groups. Providing patients input into legislative changes by means of membership at the Patient Advisory Board of the Health Ministry. Facilitating peer-to-peer support.

Audience/Constituency

Patients and their family members in the role of caregivers.

Ways of communication with constituency

Non-stop telephone helpline.
Immediate Messanger and email communication.
Social media (Facebook.com/diagnoza.leukemie and closed Facebook forums for CML and CLL patients).

Organizational objectives and key programs

Our organizational objectives are:

• A reliable source of information and education.
• Collaboration with HCP and other stakeholders within the Czech healthcare system.
• Patient representative within the Health Ministry Advisory Board.
• Providing opportunities for peer-to-peer support.
• International connection through patient networks.

Our key programs are:

• Organizing “Regional Patient Meetings” – conferences performed at 3 major Czech cities.
• Community patient meetings at locations of active patient involvement.
• Video-library as a root information base on the website.
• Updates on local and international activities via social media.
• Connecting patients with researchers.