Received: 20 October 2020
Accepted: 18 January 2021
First Online: 3 February 2021
Compliance with ethical standards
: The authors declare that they have no conflict of interest. J.G. and P.B. are European Patient Advocacy Group patient representatives and co-chairs of the main thematic group (MTG) 4 (Genetic Endocrine Tumour Syndromes) of the European Reference Network on Rare Endocrine Conditions (Endo-ERN).
: The multinational umbrella group, European Multiple Endocrine Neoplasia Alliance (EMENA), planned and executed this study as a collaborative way for the various patient groups (EMENA members) to assess patients’ perspectives on quality of care rather than as an academic or medical research study. The authors therefore did not seek ethics approvals. The authors did not collect personal data of participants that would allow them to identify participants despite their topic being about rare diseases. All participants were asked for their consent to publish the results of the survey. The data collection covers 18 out of the 28 EU member states primarily due to the lack of participatory patient representation in some countries. The authors collected anonymized data thus complying with EU General Data Protection Regulations.