Association for
Multiple Endocrine
Neoplasia Disorders

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.

Click here to view dates and to book

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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