News in Tag: para

2023 Annual Patient Information Day Success

The sun was shining on Saturday 20th May for our Annual Patient Information Day, and our venue beside the Regent's Canal in London was the perfect place to receive all the members of AMEND's rare endocrine disease communities, including those with phaeo para syndromes (PPGL).

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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.

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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.....!

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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.

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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.