The goal of the survey was to explore the patient voice to verify, educate, explore connections and guide future path for the Pheo Para Alliance. This patient survey received clearance from an Research Ethics Board and was released in the Summer of 2022 and responses were collected for six weeks.  Respondents were recruited through social media, website and email channels.

Results will be shared throughout 2022 & 2023.

A copy of the questions on the survey can be found here. (Survey questions are the property of PPA and may not be used without permission.)

Abstracts & Oral Presentations are listed below:

Pheo Para Alliance Patient Centered Research on Challenges for those with Pheochromocytoma and Paraganglioma, NANETS Multidisciplinary NET Medical Symposium, 2022

Patient centered research & management with Pheo Para Alliance to improve patient care (oral presentation). International Symposium on Pheochromocytoma, 2022

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