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