An Evaluation of Rare Cancer Policies in Europe: A Survey Among Healthcare Providers.

ABSTRACT: Rare cancers, defined as those with an annual incidence of fewer than six cases per 100,000 individuals, are associated with significant health inequalities. This study aimed to assess the knowledge, attitudes, and perceptions of healthcare providers with expertise in rare cancers regarding the effectiveness of enacted or planned rare cancer policies across Europe. Between 25 March 2023 and 5 March 2024, we conducted an online survey targeting 738 healthcare providers affiliated with the European Reference Networks and the Organization of European Cancer Institutes, yielding 92 complete responses from 28 European countries (response rate: 12.5%). While a significant portion of respondents were unaware of their country's legal definitions for rare cancers, 67.4% acknowledged that national c

SUBMITTER: Kostadinov K 

PROVIDER: S-EPMC11764363 | biostudies-literature | 2025 Jan

REPOSITORIES: biostudies-literature