Rare 2030 Knowledge base

The Rare2030 Knowledge Base has been developed with the input of the nearly 200 members of the Panel of Experts and covers their broad range of expertise in topics relevant to rare disease policy.

The knowledge collected has been organised into eight topic-based summaries:

  1. Knowledge base summary: Political & strategic frameworks relevant to rare diseases
  2. Knowledge base summary: Data Collection and Utilisation
  3. Knowledge base summary: Availability and accessibility of Orphan Medical Products (OMPs) and medical devices
  4. Knowledge base summary: Basic, Clinical, Translational and Social Research for Rare Diseases
  5. Knowledge base summary: Diagnostics
  6. Knowledge base summary: Integrated, Social and Holistic Care for People with Rare Diseases
  7. Knowledge base summary: Rare Disease Patient Partnerships
  8. Knowledge base summary: Access to Healthcare