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

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

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

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

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

AMEND 2024 AGM Rescheduled

Registered members will have received an email regarding the AMEND AGM that was to be held at midday on Thursday 31st July. Due to insufficient numbers of votes to reach a quorum, the AGM has now been rescheduled to Wednesday 15th August, with the voting link remaining active up until 6pm on the 14th.  If you have already voted, you do not need to do so again.  If you haven't seen an email, please check your spam/junk folder.  Thank you in advance to all members who action the email as requested to engage in this important exercise in transparency as required by the UK Charity Commission.

Special Event for Scottish Members

Come and join Peer Support Volunteer for Scotland, Amanda Shaw, with special guest, Genetic Counsellor, Nicola Bradshaw, on Saturday 14th September for networking, peers support and information at this in-person event near Glasgow.

Click here for more information and to book

Treasurer Vacancy

Our amazing Treasurer, Catherine Hamilton-Woodthorpe, is having to step down shortly due to other work commitments. This means that there will be a vacancy for this Executive Trustee position. Catherine has offered to stay on until the position is filled, and to help the new Treasurer settle in, to allow as seamless a transition as possible.  If you have a background in accountancy, or know someone who does, and are potentially interested in getting involved at this level to help our small but essential charity, then please do review the job specification. This is one of the most important volunteer roles at AMEND, so if you feel you could do it justice, then please do get in touch as soon as possible.

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AMEND Involved in Novel SIMBA Training Event

This two-day continuing professional development (CDP) programme focused on the adrenal gland was aimed at medical professionals and medical students both in person and via the internet, with over 100 registered.  In the main, these events are lead and run by the medical students of the SIMBA student committee, as part of their learning experience.  AMEND was invited to take part to represent phaeochromocytomas and adrenocortical cancer (ACC).

Click here to learn more

AMEND Attends SICEM 2024 in Seoul

AMEND CEO, Jo Grey, was honoured to be invited to give a presentation at the 2024 Seoul International Congress of Endocrinology & Metabolism (SICEM) meeting in April, organised by the Korean Endocrine Society.  A special symposium on multiple endocrine neoplasia syndromes, the first of its kind at the meeting, was held at the start of the conference.  AMEND thanks the organisers for the invitation and for enabling us to attend this fabulous conference in the amazing city of Seoul.

Click here to learn more