7th INCA Global Patient Advocates Summit

June 2019

June 2019 – 21 organisations from all over the world, who actively monitor and support patients with NETs, met in Plovdiv (Bulgaria) on 18 and 19 June during the 7th INCA summit for patient advocates. This annual event brings together the world’s leading patient advocates and medical experts in NETs to discuss the major challenges faced and best practices in patient care. It also aims to highlight INCA’s three strategic pillars, namely:

  • Raising awareness of NETs among the general public and medical profession
  • Ensuring safe access to optimal treatment and care
  • Advancing NET research

This 7th edition sought to address opportunities to improve the lack of information and communication as well as the quality of care and research in relation to NETs. Several speakers from the medical community presented their analyses and experience, addressing the following topics in particular:

  • Psychological support for NET patients and their loved ones
  • The logistical burden linked to treatments
  • Understanding the treatment of a rare disease and providing patients with information
  • Maintaining patients’ quality of life
  • Access to PRRT (nuclear medicine)
  • Assessment mechanism for health technologies and reimbursement decisions
  • Research based on genetic studies
  • Involving patients in research and improving care
  • Fundraising and collaborating with regulatory bodies