Association for Multiple Endocrine Neoplasia Disorders - AMEND

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Association for Multiple Endocrine Neoplasia Disorders - AMEND

Providing information resources and support services to anyone affected by the rare endocrine conditions; MEN, PPGL, ACC and MTC.

Please visit our website for information and to join (free membership). AMEND works hard to provide free information and support services to anyone affected by multiple endocrine neoplasia (MEN), their families and friends. Free welcome packs including MEN Passport and invitation to our Private Facebook Groups are sent to those joining AMEND for free via our website at: www.amend.org.uk. We also provide information and support for people affected by Inherited Phaeochromocytoma and Paraganglioma (PPGL) syndromes and for adrenocortical cancer (ACC) through Phaeo Para Support UK and ACC Support UK, respectively. For Phaeo Para Syndromes visit www.phaeoparasupport.org.uk and for Adrenocortical Cancer visit www.accsupport.org.uk.

02/02/2026

🚀 We have lift off!

AMEND's smartphone app for members is here! Now you can have the information you need, even when you're offline.

The app replaces our traditional hardcopy MEN1 Member Pack, eliminating the wait for the postman. Now it's there as soon as you join!

Existing MEN1 members check your emails for instructions on accessing the app, and for anyone who is not yet a member, join today (it's free) to receive your download link.

Developed with Final Version, powered by Publex.

📲 https://www.amend.org.uk/patients/join-amend-for-free/

29/01/2026

Meet Ed! Ed is running the 2026 London Marathon in support of AMEND and for his daughter, Isla.

Isla was born with MEN2B. She was just three years old, when the family received this life-changing diagnosis. Despite Ed being a surgeon himself, he says that AMEND has been an incredible source of support ever since, helping to navigate an unfamiliar and frightening journey with compassion, clarity and kindness.

By running the marathon, Ed has said that he hopes to raise awareness and give something back to a charity that has given them so much.

If you would like to donate to Ed and hear a little bit more about why he is running here is a link to his fundraising page.
https://www.totalgiving.co.uk/mypage/ed_dickson

🏃‍♀️👟🎽🤞

26/01/2026

Newly diagnosed with ?

AMEND provides information resources and support services to families affected by multiple endocrine neoplasia syndromes, including MEN2A. You can hear the experiences of others with MEN2A on our website, as well as access all our information resources for adults and children for free.

📲 https://www.amend.org.uk/patients/endocrine-diseases-information/men-2a/

24/01/2026

The first online peer support meeting of 2026 is being held on Thursday 12th February 7-9pm.

Join volunteer Sophie for 2 hours of informal chat and meet others in similar circumstances.
Don't forget to book your place!

https://www.amend.org.uk/patients/amend-support-services/events/regional-events/

It's good to talk!

23/01/2026

WE NEED YOU! We have places in a number of running events in 2026.

Great Bristol 10k - Sunday 10th May
Great Manchester 10k - Sunday 31st May
Great North Run - Sunday 13th September
Great South Run - Sunday 18th October

Come on members, family and friends, set yourself a challenge for 2026 and run for AMEND!
You get a free running vest, shout outs on social media and more importantly you can raise valuable funds for AMEND.
If anyone is interested in taking a place then please let Helen in the office know, helen@amend.org.uk

🏃‍♀️🏃🎽👟🥈

22/01/2026

We are pleased to inform you that there are a number of new online and in person peer support meetings scheduled for 2026.

Organised and facilitated by AMEND’s Peer Support Volunteers, these friendly and free gatherings are small and informal, and offer 2 hours of relaxed discussions that aim to provide a regular opportunity for peer support. Anyone affected by MEN or PPGL syndromes can attend. Patients, family, carers, friends – all are welcome!

Please see the website for details, dates and how to book.
https://www.amend.org.uk/patients/amend-support-services/events/regional-events/

Its good to talk! 🗣️👍

21/01/2026

👧👦 If you or your child have recently been diagnosed with , how do you explain it to them?

AMEND has information resources not just for adults, but for children and young adults too. This cartoon is suitable for the youngest members of our MEN1 community, specifically ages 5-8 years. In addition, we have comic books for children aged 8 and upwards. These make it much easier to explain, in an age-appropriate way, about this complex condition.

It's also a great way for children without MEN1 to learn about the condition that affects other members of their family. Watch this and access other resources via our website.

📲 https://www.amend.org.uk/patients/kids/

10/01/2026

Rezolute is a late-stage rare disease company focused on substantially improving the quality of life for individuals living with hyperinsulinism (HI) and is now enrolling participants in the upLIFT study, a phase 3 clinical trial that is testing whether or not a new therapy, called ersodetug, can safely reduce hypoglycaemia in adults with tumour HI.

📲 https://www.amend.org.uk/patients/research-opportunities/

07/01/2026

📣 MEN2B Added to Generation Study

MEN2B (RET mutation number 918) will be added to the testing panel from March 2026 to detect the disease in new born babies in time to treat them through thyroid surgery to improve long-term outcomes.

Learn more: https://www.amend.org.uk/men2b-added-to-generation-study/

05/01/2026

📣 Help Shape the Future of Neuroendocrine Cancer Research – Share Your Priorities Today

Neuroendocrine Cancer UK and UKINETS are jointly leading a James Lind Alliance (JLA) Priority Setting Partnership (PSP) to identify the most important unanswered questions in the diagnosis, treatment and care of neuroendocrine cancers. This national initiative places patients, carers and healthcare professionals at the heart of research decision-making, ensuring the issues that matter most are the ones that receive attention.

Take part here: https://www.neuroendocrinecancer.org.uk/help-shape-the-future-of-neuroendocrine-cancer-research-share-your-priorities-today/

21/12/2025

AMEND has so many ways to donate, including donation certificates as birthday presents. Find out more on our website and consider a gift to AMEND this Christmas.

Every donation goes towards helping inform our rare endocrine disease communities to help them self-advocate over their lifetime, as well as provide free support services like our professional psychological helpline.

📲 https://www.amend.org.uk/fundraisers-and-supporters/donate/donate-to-amend/

Address

Tyler House, 58-66 Morley Road
Tonbridge
TN9 1RA

Opening Hours

Monday	09:00 - 17:00
Tuesday	09:00 - 17:00
Wednesday	09:00 - 17:00
Thursday	09:00 - 17:00
Friday	09:00 - 17:00

Website

https://www.amend.org.uk/

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Our Story

AMEND works hard to provide free information and support services to anyone affected by rare diseases of the endocrine system, including multiple endocrine neoplasia (MEN), succinate dehydrogenase (SDH) syndromes and adrenocortical cancer (ACC). Free welcome packs including MEN Passport and invitation to our Private Facebook Groups are sent to those joining AMEND for free via our HONCode certified website at: www.amend.org.uk.