pheochromocytoma Archives - Phaeopara Support

AMEND's 2024 Annual Patient Information Day will be held on Saturday 1st June, in central Birmingham. This event is open to anyone affected by MEN or PPGL syndromes, as well as for those affected by ACC and MTC. Come along and benefit from a 2-hour Q&A session with an expert in your disease, as well as plenty of other relevant sessions. There is a separate stream for young adults from 12 years of age. Tickets are free but donations are appreciated.

Click here for more information and to book

NETs in RETS

November 10th each year is NET Cancer Day, initiated by the International Neuroendocrine Cancer Alliance, of which AMEND (and therefore PPSUK) is a member representing genetic neuroendocrine tumour syndromes. To better explain the link between NETs and RETS (rare endocrine tumours and syndromes), watch our webinar, NETs in RETS, with Professor Karim Meeran, recorded on Thursday 9th November.

Click here to learn more

Charity Film Awards Voting Period Extended

In autumn 2022, we entered our new children's cartoon about paraganglioma syndromes ('Me, my mum and Dave') in the 2023 Smiley Charity Film Awards. The first round voting period has now been extended until the end of 16th January! Please vote for our film to help raise awareness of PGL syndromes and celebrate this wonderful piece of work.

Click here to view and vote!

Please vote for our cartoon!

We have entered our lovely little cartoon, 'Me, my mum and Dave' in the 2023 Smiley Charity Film Awards! Please vote for us to help raise awareness of PGL syndromes.

Click here to vote!

New Kids’ Cartoon Helps Explain PGL Syndromes to 5-year olds

Our cartoon for kids about PGL syndromes was launched on NET Cancer Day 2022 (10th November). The Cartoon, 'Me, My Mum, and Dave' explains PGL syndromes in the simplest terms and is aimed at children from age 5.

Click to learn more

Phaeo Para Awareness Day 2022

PHAEO PARA AWARENESS WEEK (22-26 AUGUST)

The last full week of August has been adopted as the awareness week for our diseases and we are organising a few activities to try to highlight the symptoms of phaeo para patients to raise awareness and encourage earlier diagnosis. We hope you will take part!

Get Ready for Phaeo Para Awareness Week!

Monday 23rd to Sunday 29th August is Phaeo Para Awareness Week, and we'll be raising awareness of phaeochromocytomas and paragangliomas throughout. Here's how you can help.....!

Click here for more information

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.

Click here to read and download

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.