PPGL Archives - Phaeopara Support

Special Event for Scottish Members

Come and join Peer Support Volunteer for Scotland, Amanda Shaw, with special guest, Genetic Counsellor, Nicola Bradshaw, on Saturday 14th September for networking, peers support and information at this in-person event near Glasgow.

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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.

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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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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.

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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!

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.....!