AMEND news in Tag: MEN2B
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2026 Peer Support Meetings
We are pleased to confirm the dates for our 2026 Peer Support Meetings for those with MEN or PPGL syndromes. You can book now to connect with others.
Click here to view dates and to book
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MEN2B Added to Generation Study
MEN2B RET mutation 918 to be added to the Genomics England’s Generation Study from March 2026.
Learn more
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2025 Information Day Speakers Confirmed!
Our line-up of excellent expert speakers are now confirmed for our 2025 Annual Patient Information Day in central London. Our friendly and essential information event for patients and partners affected by multiple endocrine neoplasia, inherited paraganglioma syndromes, and adrenocortical cancer is free and includes lunch and refreshments. Come along and find out why it's so highly rated!
Click here for more information and to book
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2025 Peer Support Meetings Confirmed
We are delighted to report that our Peer Support Volunteers have now scheduled a number of meetings (online or in-person) where you can meet others either to give or receive peer support. Grab a coffee and join us!
Click here for more information
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AMEND Co-Authors Article on MEN2
We were honoured to be invited by surgeon, Mr Tom Kurzawinski, to co-write an article for the journal, Endocrine-Related Cancer, about patient experiences of living with a RET gene mutation (causing MEN2 and MEN3).
Click here to learn more
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Survey for MEN Patients
The European MEN Alliance (EMENA), of which AMEND is an active member, has developed a survey for anyone affected by MEN syndromes, to find out what affected patients, partners and parents, consider to be the unmet needs in the patient pathways. Thank you for taking your time to complete this important survey.
Click here to take the survey
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2024 Annual Patient Information Day
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 available on a donation basis (minimum £1 per ticket).
Click here for more information and to book
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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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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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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.
Click here for more information