Searchable abstracts of presentations at key conferences in endocrinology

ea0089o11 | Other | NANETS2022

Pheo Para Alliance Patient Centered Research on Challenges for Those with Pheochromocytoma and Paraganglioma

Rose-Krasnor Linda , Alband Stephanie , W. M. Lenders Jacques , Fishbein Lauren

Background: Patients with pheochromocytoma/paraganglioma (PPGL) often face difficulties in obtaining timely and accurate diagnosis, as well as in accessing experienced specialists. However, little is known about the experiences of patients in obtaining effective care.Methods: To address this gap and give voice to the patients, we invited potential participants, through social media, email, and the PheoPara Alliance (PPA) website, to complete a 20-min onl...