AMEND news in 2023
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NETs in RETS Webinar with Prof Karim Meeran
We were delighted that AMEND Trustee, Professor Karim Meeran, could join us for our webinar on Thursday 9th November, to explain the relation between neuroendocrine tumours (NETs) and rare endocrine tumour syndromes (RETS). You can now view the webinar recording on our YouTube Channel.
Click here to go to YouTube
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Volunteer for a new research project
Genetic Counselling Student from Cardiff University, Emma Coats, would like to hear from patients with any of the MEN syndromes and who are based in the UK for her research study looking at patient experiences of surveillance (outpatient appointments, test, scans, etc).
Click here for more information
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AMEND Attends INCA Summit
AMEND is a member of the International Neuroendocrine Cancer Alliance (INCA), the organisation responsible for NET Cancer Day (AKA Neuroendocrine Cancer Day). Each year, INCA holds a Summit where their member organisations from around the world can get together and discuss projects, plans, strategy, and also share best practice ideas with one another.
Click here to read
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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 is a member representing genetic neuroendocrine tumour syndromes. To better explain the link between NETs and RETS (rare endocrine tumours and syndromes), join us for our webinar, NETs in RETS, with Professor Karim Meeran on Thursday 9th November from 18:00-19:00.
Click here for more information
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Big Give 2023 Christmas Campaign
Once again, AMEND is 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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Current Unmet Needs in Multiple Endocrine Neoplasia Syndromes
From time to time, AMEND CEO, Jo Grey, is asked to give presentations at conferences and other events, to be the voice of patients with MEN syndromes. What does she tell them and why?
Click to learn more
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AMEND Annual Patient Information Day Success
The sun was shining on Saturday 20th May in London for our Annual Patient Information Day, and our venue beside the Regent’s Canal was the perfect place to receive all the members of our rare endocrine diseases communities who had booked to attend.
Click here to read more
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AMEND at World MEN 2023
At the end of April, AMEND CEO, Jo Grey, attended the World MEN Scientific Meeting in Marseille, France. She was invited to give a talk about patient perspectives of unmet needs in MEN syndromes.
Click here to read the article
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AMEND CEO Writes Article for Endocrine Nurses
AMEND CEO, Jo Grey, has written a short article for the Society for Endocrinology's Endocrine Nurse newsletter on the 20th anniversary of the charity. In the article she explains how far the charity has come in the last 20 years and where it needs to go for the next 20.
Click here to read the article
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Kids’ Cartoon Reaches Charity Film Awards Finals!
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 to view and vote