Association for
Multiple Endocrine
Neoplasia Disorders

AMEND Strategy 2027-2030

Earlier this year, the Trustees met with expert Strategic Consultants, Catalyze Consulting, to work through members' feedback and prioritise strategic aims for 2027 to 2030.  This is a very important part of the role of the Trustee Board which occurs every 3 years.

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British Association of Endocrine & Thyroid Surgeons (BAETS) Conference

This was Jo’s last attendance at a BAETS meeting ahead of her imminent retirement. It was lovely to be able to meet with old faces and new in the wonderful venue in Krakow, Poland.

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AMEND Presents at ENS@T Scientific Meeting

AMEND CEO, Jo Grey, presented 'Patient Experience of Phaeochromocytoma' at the 2026 ENS@T meeting in Porto in October.

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Somatotrophinoma and primary hyperparathyroidism: a novel MEN1-like syndrome?

Researchers have reported what may be the first known case of a change (variant) in the CHEK2 gene causing a combination of conditions that closely resemble Multiple Endocrine Neoplasia type 1 (MEN1).

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Whole genome and exome sequencing of pNENs to investigate PRRT response

A new study looked at the DNA of pancreatic neuroendocrine tumours (pNETs) to see whether genetic changes could explain why some patients respond better than peptide receptor radionuclide therapy (PRRT) than others.

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Functional imaging in hereditary endocrine neoplasms

This review explains how newer types of scans, known as functional imaging, are improving the care of people with inherited endocrine tumour syndromes such as MEN1, MEN2, von Hippel-Lindau (VHL) disease and hereditary paraganglioma and phaeochromocytoma syndromes.

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Study to Identify Causes of Interference of the Plasma Free Metanephrine Test

This study looked at whether common medicines or long-term health conditions can cause misleading results in blood tests used to detect rare adrenal tumours called pheochromocytomas and paragangliomas.

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The Real Story Collaboration

AMEND continues its collaboration within this UK-wide, multi-stakeholder collaboration established to better understand and improve the management of adrenal crisis among people living with adrenal insufficiency, including Addison's disease.  Adrenal insufficiency in our communities may be caused by removal of both adrenal glands and renders a patient dependent on steroid replacement medication.  

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AMEND Represents GenNETS Internationally

From 7-8 September, AMEND CEO, Jo Grey, represented our Genetic Neuroendocrine Tumour Syndrome (GenNETS) patient communities at the annual summit of the International Neuroendocrine Cancer Alliance in Sofia, Bulgaria.

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AMEND Endorses Call for More Biomarker Information on Belzutifan

Along with other patient groups and medical societies, AMEND has endorsed a group of clinicians and researchers who have submitted a detailed letter to the medical journal, Trends in Endocrinology & Metabolism, calling for more data from the clinical trial of Belzutifan to be released.

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Successful Joint Patient Education Event

On Saturday 6th June, AMEND joined forces with Neuroendocrine Cancer UK run a patient education event in Sheffield, under our Neuroendocrine Life Alliance collaborative working banner.  Over 100 people attended on the day along with the excellent speakers.  

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Additive effect of RET polymorphisms in MEN2A-associated hyperparathyroidism

This study looks at people with a rare inherited condition called MEN2A. This condition can cause several health problems, including thyroid cancer, adrenal gland tumours, and overactive parathyroid glands (called hyperparathyroidism, or HPT). Not everyone with MEN2A develops HPT, and doctors want to understand why. 

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Cardiovascular Risk Profile of Low-dose Prednisolone and its Effect on the Quality of Life in Patients with Adrenal Insufficiency

This study looked at people with adrenal insufficiency, a condition where the body does not make enough important adrenal gland hormones. These patients need daily steroid medicine to stay well. 

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Guideline: Transition from Paediatric to Adult Endocrine Care

This joint guidance from the European Society for Endocrinology and European Society for Paediatric Endocrinology explains how to support young people with hormone (endocrine) conditions as they move from children’s services to adult healthcare.  The move to adult care is a very important time, usually between the ages of about 12 and 25. Many young people stop attending appointments during this period, which can harm their long-term health. 

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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.

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2026 London Marathon Record!

This year, the London Marathon is held on Sunday 26th April, with a record number of runners participating in aid of AMEND!  In addition to our Charity Ballot place recipient, Ed, three other runners are getting their running shoes on to raise essential funds for AMEND.  We wish them all the luck in the world and hope that you can sponsor one or more of them.

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Liquid Hydrocortisone Discontinued

In May 2025, we were warned by the Department of Health and Social Care (DHSC) of a shortage of liquid hydrocortisone (hydrocortisone sodium phosphate), used for the prevention and treatment of adrenal crisis, with supply expected to resume in May 2026.  We share here the news that it has now been permanently discontinued.  For more information on this and what to do now, please visit our colleagues at the Addison's Disease Self-Help Group.

Learn more at ASDHG website

2026 Patient Information Event Open for Bookings

In 2025 Neuroendocrine Cancer UK and AMEND launched the Neuroendocrine Life Alliance.  To mark this collaborative partnership, we are hosting a Patient Summit bringing together patients, families, and experts for a day of information, support, and connection.  Registration is now open – we would love for you to join us.

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2026 UK Rare Cancers Act Now Law

The Rare Cancers Act 2026 will prioritise long overlooked aspects of research, and has the potential to transform outcomes for those affected by rare and less common cancers.

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Cryoablation of bone metastases in thyroid and adrenocortical cancers

This study looked at a minimally invasive treatment called cryoablation, which uses extreme cold to destroy cancer that has spread to the bones, in people with thyroid (including MTC) or adrenocortical cancer.

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Long-term calcitonin after thyroidectomy for medullary thyroid cancer in MEN2A

This study followed people with MEN2A who had their thyroid removed to understand how often long-term blood tests for calcitonin are really needed.

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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.

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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

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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.

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New MEN1 App Launched

Today, AMEND has launched an app for MEN1 members ensuring that information is always at hand, even if offline.  The app replaces the traditional, expensive, and slow-to-receive hardcopy MEN1 Member Pack.

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Grant from The Albert Hunt Trust

We are hugely grateful to the Trustees of The Albert Hunt Trust who have granted AMEND £5,000 towards 2026 core costs.

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.

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New Phase 3 Clinical Trial for Hyperinsulinism Drug

The upLIFT study, phase 3 clinical trial of ersodetug for tumour hyperinsulinism (HI), a drug from Rezolute (a late-stage rare disease company) is now enrolling participants through 2 UK centres.

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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.

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