AMEND news in Tag: MEN3
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Adrenal Crisis Patient Survey
Building on the earlier study, the Addison’s Self-Help Group is leading on a UK project called, The Real Story: Adrenal Crisis Management in the UK, which involves a follow up survey and in-depth interviews to capture patient experiences of preventing and managing adrenal crisis. AMEND is one of the patient groups collaborating so that our communities can be heard too.
Learn more and participate
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The prostate is a common site of disease in patients with MEN2B and MTC
A recent study looked at young men with MEN2B (also known as MEN3), which causes medullary thyroid cancer. Doctors found that problems in the prostate were more common than previously thought, even in teenagers.
Click here for more information
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National Cancer Plan for England Launched
Wednesday 4th February 2026, marked as World Cancer Day, saw the publication of the detailed National Cancer Plan for England by the Department of Health & Social Care
Click here to learn more
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MEN2B and Family Planning Survey
In collaboration with clinicians at St Bartholomew’s Hospital in London, AMEND would like to learn more about attitudes and experiences of those affected by MEN2B (also known as MEN3) to family planning.
Click to learn more and to participate
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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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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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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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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