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.
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).
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.
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.
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.
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?
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.
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.
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.
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!
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.
Got 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 MEN 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.
Check out our merchandise shop where you will find REAL bargains! Up to 83% off some items! Get a warm and cosy fleece for just a tenner!
Help us Develop GP Resources
This year AMEND is developing information resources for GPs on our rare endocrine tumours and syndromes. We need your input to ensure that the project is successful.
Join Our Smartphone App Focus Groups!
We are about to begin work on replacing our MEN Passports with a smartphone app. We need to hear the thoughts of those who will use it and are inviting those with MEN2 and MEN3 to join our Focus Group in February.
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!