News in Tag: paraganglioma

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

Kids’ Cartoon Reaches Finals of Film Awards!

We are thrilled that our cartoon for kids about PGL syndromes has reached the finals of the Charity Film Awards! We now have a chance to win a People’s Choice Award if we get enough votes in the 2nd round. So, even if you voted for our film in the first round, please do vote for it again by Friday 10th March! Thank you!

Click here to view and vote

Become a Peer Support Volunteer

We are currently recruiting for Peer Support Volunteers, with a preference for volunteers with MEN2 or MEN3 living in the South, Southeast and East of England.  All Volunteers will receive training (x1 weekend or weekday), must attend an annual Feedback & Development Day (x1 weekend), and will be required to hold x1-2 virtual meetings (weekends or weekday evenings), and x2 in-person meetings (weekends) per annum.

Click here to learn more

Do you have a story to tell?

Our members love to read about the experience of others with their disease. Some lovely people have already written their 'stories' or starred in our films, but for our 20th anniversary, we're aiming to include another 20 stories on our webpage.  Do you have a story to tell about you and your family's experience of diagnosis, treatment and life with your PGL syndrome? We'd love to hear it!  We have a template for you to use if you want to, but otherwise, do your own thing and don't forget to send a few photos.

Click here for more information

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

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