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).

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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.

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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

New! Young Adults’ Survey

This year, AMEND wants to hear from our younger UK community members aged 12-25 about how their or their sibling’s condition affects them (if at all!), and what they would like to see AMEND do for them by way of activities and resources over the coming months and years. To do this, we have designed two short surveys (ages 18-25 and 12-17) that should take no more than 10 minutes to complete.

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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.

Click here to go to YouTube

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

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.  

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