Diagnoza leukemie, z.s. (Czech Republic)

Scope of organisation

Description

Diagnoza leukemie is a well established and vocal patient organisation known for its strong international connection, implementing a modifying best practices and inspiration from the European and global patient communities, into the Czech patient advocacy.

Originally (2006) a CML focused organisation but from change of statutes in 2014 has started integrating patients with other types of leukaemia, MDS and MPN. CLL patients have become a strong pillar of the membership and CLL specific patient education is a robust part of the activities thanks to active collaboration with the Czech CLL Study Group.

• Organising patient conferences for CLL patients accompanied by caregivers, with lectures given by KOLs of the Czech CLL Study Group
• Navigating CLL patients for a second opi non over treatment strategy to leading CLL experts
• Running a non-stop telephone helpline to provide information in peer-to-peer support
• Reporting on local and international hematology events
• Connecting patients with researchers
• Transferring topics discussed within CLLAN events into the Czech patient community
• International focus: chairperson of Diagnoza leukemie is an EHA PAC member, ESMO PAWG member and member of Ethics committee of IMMUE IMAGE consortium. She is also a co-founder and president of Leukemia Patient Advocates Foundation, Steering committee member of CML and CLL Advocates Network.

Support services offered and available resources