Diagnóza leukemie (Czech Republic)
Scope of organisation
Diagnoza leukemie is a well-established and vocal patient support organisation known for its strong international connection, implementing and modifying best practices and inspiration from the European and global patient communities, into the Czech patient advocacy. On individual basis, they have succeeded in providing access to therapy even for acute leukemia patients.
Since 2014 we have incorporated CLL-specific activities and we organize 3 patient conferences per year, 1-2 informal patient+carers meetings for peer to peer support, we collaborate with the Czech CLL Study Group.
- Organizing patient conferences for CLL patients accompanied by caregivers, with lectures from the KOLs of the Czech CLL Study group,
- Navigating CLL patients for a second opinion over treatment strategy to leading CLL experts,
- Running a non-stop telephone helpline to provide information and peer-to-peer support.
- Reporting on local and international hematology (CLL-specific) events,
- Connecting patients with researchers (regular excursions to the labs of the Institute of Hematology),
- Transferring topics discussed within CLLAN events into the Czech patient community.
Support services offered and available resources
Information on COVID-19
Services for HCP
- Healthcare professional education
Patient support services
Education services / Capacity building
- Educational events
- Publications and presentations at relevant blood cancer meetings
Campaigning and Advocacy
- Advisory statements and position papers
- Awareness campaigns
- Health Technology Appraisals (HTA)
- Input in writing and/or in person to government and regulatory organizations
- Fundraising resources
- Personal Advocacy
- Surveys of the community served