AMEND news in 2023
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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
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Big Give 2023 Christmas Campaign
Once again, we are running a fundraising campaign in the run-up to Christmas 2023, raising much needed funds to continue to provide our free, professional Counselling Service to our most vulnerable members. The Big Give Christmas Campaign gives us the chance to double general donations during November/December. Our first step is to find our Pledgers. Pledgers are people or organisations who provide the initial Match Funding by promising to donate a sum over £100. The deadline for the collection of Pledges is 1st September. These Match Funds will be used to double donations of all sizes during the donation period, until they are used up. Pledges are promises of funding, and are paid after the donation period ends, and the total amount depends on the total donations received. If you or someone you know could help us by becoming a Pledger, please follow the link below for more information and to Pledge.
Make a Pledge
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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).
Click to learn more
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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
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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
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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.
Click here for more information
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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!
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Peer Support Meetings for 2023
A range of dates and times for in-person and virtual Peer Support Meetings during 2023 have now been agreed. Our Peer Support Volunteers hope to welcome you to one soon!
Click here for more information