AMEND news in Author: Jo Grey
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Annual Patient Information Day Booking Open
The 2025 AMEND Annual Patient Information Day will be held on Saturday 31st May in central London. Disease-specific Q&A sessions with medical experts will be held in the morning and followed by other useful and topical sessions throughout the day. This event is FREE.
Click here for more information and to book
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New Webcast! Guidelines
Our latest Webcast on the topic of Guidelines launched on Friday 24 January. In this episode, AMEND CEO, Jo Grey, talks to Dr Carla Pieterman, about how guidelines are developed and by whom, as well as why doctors sometimes need to deviate from the recommendations.
Click here to watch this and other Webcasts
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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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Fundraising Event Registration Now Live!
If you are interested in fundraising for AMEND, (incl. Phaeo Para Support UK and ACC Support UK), you can now find a wide range of running events for which we have charity places on this website.
Click here for more information
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Rareminds Podcast on Preimplantation Genetic Testing
Rareminds CEO Kym is joined in this podcast by Mary who is currently undergoing pre-implantation genetic testing (PGT - formerly PGD), and Sarah Wynn, CEO of Unique, to discuss what the process involves, and the challenges and benefits it can bring. Rareminds is the provider of AMEND's Counselling Service. PGT is available as a conception method for those affected by MEN syndromes. You can listen to this and other podcasts by Rareminds via their Spotify Account.
Listen via Spotify
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Survey on Pregnancy in MEN Patients
Dr Ruth Casey from the University of Cambridge Hospitals NHS Trust would be grateful for any ladies who have been pregnant since their MEN1, MEN2A or MEN2B diagnosis, or who are currently planning on becoming pregnant, to complete her short survey to provide an up-to-date picture on counselling given before/during pregnancy.
Click here to take the survey
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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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Genomics England New-born Screening
Back in August, Genomics England removed the RET gene (that causes MEN2/3) from their new-born screening research study. AMEND submitted a response expressing disappointment at this decision. We are grateful to Clinical Geneticists, Drs Fiona Lalloo and Louise Izatt, for working with the research team on this, which has resulted in RET mutation codon 918 (MEN2B) being reinstated into the study at the next phase.
Click here to learn more about the new-born screening programme
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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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Christmas Shopping in Aid of AMEND
Visit our website shop for Christmas Cards, and our sustainable cotton clothing, with all profits going to supporting AMEND's work for the rare endocrine syndrome and tumour communities.
Click here to visit our shop