AMEND news in 2020
New Patient Information Book for PPGL Syndromes
Our detailed information book for patients on inherited phaeochromocytoma and paraganglioma syndromes is now available to download from our website. In addition, members with PPGL syndromes will received this booklet for free when registering. We are eternally grateful to our Medical Advisory Team and special advisors for their help in producing this book.
Welcome to our new website!
Welcome to AMEND's brand new group, Phaeo Para Support UK and a brand new website! After canvassing AMEND's members in 2018, it became clear that our phaeo para members found it difficult to identify with AMEND and that a new organisation would be useful, not just to provide information specifically on phaeo para syndromes, but also to raise awareness and reach the wider community. We hope you enjoy exploring during this, the inaugural Phaeo Para Awareness Week!
PPSUK Social Media Presence Expands
After much hard work, we are now on several popular social media channels, including Twitter, Instagram and YouTube.
New Resources for Symptom Management
PPSUK Lead Counsellor, Kym Winter, has developed a video and series of short exercises to help you 'ride the wave' of hormone surges. Hormone Surges: managing anxiety and riding out the wave, provides suggestions for breathing and relaxation exercises to try if you experience adrenal or hormone crises.
Introducing PPGL (SDH) Syndromes Films’ Launch
We are delighted today to launch our new patient experience films about PPGUL syndromes caused by Succinate Dehydrogenase (SDH) mutations. These were produced as part of our Phaeo Para Support UK project thanks to a grant from Advanced Accelerator Applications.