Below are a selection of videos produced by PPSUK or AMEND. In addition to these, there are a variety of videos for use as emotional well-being tools, including:
Patient Experience Films
These films about PPGL (SDH mutation) Syndromes were produced in early 2020 (before lock-down) to raise awareness of these rare genetic syndromes. We are grateful to all the patients, medical professionals and film crew who gave their time to produce our Patient Experience Films. We hope you find them interesting and inspiring.
Introducing SDH Syndromes - Diagnosis
Introducing SDH Syndromes - Treatment
Introducing SDH Syndromes - Future
Annual Patient Information Day Presentations
2018 Patient Information Day
Click here to view videos on: Dealing with Diagnosis and Uncertainty; Communicating with your GP; Working with your MDT; Getting Involved in Research and Preparing for Surgery.
2017 Patient Information Day
Click here to view videos on: Overview of MEN and SDH Disorders, Introduction to Adrenocortical Cancer (ACC), Sharing Difficult News with Friends and Family; Understanding Research