SERVICES
Support for children
- Diagnostics
- Treatment
- Individual care plan
- Rehabilitation
- Multidisciplinary team (councils, specialist consultations)
- Possibility to consult abroad
- Possibility to do testing abroad
- Improved access to expensive drugs
Support for parents
- Coordination of teaching for patients with rare diseases and their relatives
- Information brochures and events
Support for physicians
- Methodological support
- Children rare diseases IT system (subsystem) and biobank development and management
- Support in finding potential partners and financing for children rare diseases research
- Organization of professional qualification improvement events related to diagnostics, treatment, rehabilitation and palliative care of children with rare diseases
- Cooperation with other similarly oriented national and international institutions and patient organizations
Patient pathway when addressing Coordinating Centre for Children‘s Rare Diseases for the first time (CCCRD)
2018 09 18
