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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.

10/11/2025

📣 Today is NET Cancer Day

Share this video, share your story, get involved, help raise awareness!

📲 https://incalliance.org/ncd-2025/

09/11/2025

‼️Tomorrow is NET Cancer Day!

By working with INCA, AMEND is not only helping to raise awareness of neuroendocrine tumours and their symptoms, but also striving to improve the time to diagnosis for these tumours and their care around the world. You can help too by completing the INCA SCAN survey this NET Cancer Day (available in 11 languages).

📲 https://incalliance.org/scan2025/

08/11/2025

With Christmas slowly approaching, AMEND is here for all your Christmas jumper/hoodie/t shirt needs!

Why not take a look and support AMEND during the holiday season. All profits from sales go to support the work of AMEND. Visit our sustainable store for your Christmas shopping! 🎁🎁

https://amend.teemill.com/collection/christmas-2020/

07/11/2025

Its nearly time for our last peer support meeting of the year. This virtual meeting is being held on Zoom on Thursday 20th November 7-9pm.

Join our 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/support/events/regional-events/

It's good to talk!

06/11/2025

🤩 3-7 November marks Trustee Week!

The Trustee Board of AMEND are the critical friends of AMEND, helping to steer the charity in the right direction, ensuring its legal and financial compliance. Here we share the final 5 members of our current Board and you can find out more about them and why they wanted to get involved on our website. We thank them for all their support 🙏

If you're interested in a Trustee Board role, you'll find information about this there too!

📲 https://www.amend.org.uk/how-we-are-governed/

05/11/2025

❓Why mark NET Cancer Day this November 10th?

Neuroendocrine tumours arise from neuroendocrine cells, which are specialised cells that receive signals from the nervous system and respond by releasing hormones. In our AMEND patient communities, these tumours include, phaeochromocytomas, paragangliomas, medullary thyroid cancer, and duodenopancreatic tumours.

Find out how to get involved on November 10th, by visiting the NET Cancer Day website (courtesy of INCA).

📲 https://incalliance.org/ncd-2025/

03/11/2025

🤩 3-7 November marks Trustee Week!

The Trustee Board of AMEND are the critical friends of AMEND, helping to steer the charity in the right direction, ensuring its legal and financial compliance. Here we share 5 members of our current Board and you can find out more about them and why they wanted to get involved on our website. We thank them for all their support 🙏

If you're interested in a Trustee Board role, you'll find information about this there too!

📲 https://www.amend.org.uk/how-we-are-governed/

29/10/2025

🚴👏🫶 During September, Alex Shanks cycled (uphill!) the 1000 miles from Land’s End in Cornwall to John O’Groats in Scotland in aid of AMEND and in honour of his work colleague Jane who has MEN1. It was a huge effort that I just had to chat to both Alex about the ride, and Jane about being his inspiration for the ride! I found out answers to important questions like 'why ride this uphill?!'

You can watch the whole video via our website as well as sponsor Alex to help him reach his fundraising goal! Thanks

📲 https://www.amend.org.uk/1000-miles-for-amend/

cottages.com

27/10/2025

Race to the AMEND shop for all your Christmas card needs! 🏃‍➡️🏃‍♀️‍➡️

All our cards are now £4 for a pack of 10 cards in 2 different designs. All prices shown include postage.

To order cards or any of our other fabulous merchandise please use the following link:
https://www.amend.org.uk/product-category/merchandise/
🎄🎅❄️

14/10/2025

📣 AMEND's Patient Webinar on Medullary Thyroid Cancer is now endorsed by the British Thyroid Association!

Join us for medical expert talks, and a live Q&A from 19:00-20:30 on Wednesday 19th November. This free event will cover diagnosis and management of MTC as well as newer therapies for MTC that has spread.

Registration essential via the following link: 📲 https://us02web.zoom.us/webinar/register/WN_pocKAaNEQXK7qGd94GLpuw #/registration

02/10/2025

We are delighted to share that Alex has completed his Lands End to John O’Groats cycle ride in aid of AMEND. Please sponsor Alex in recognition of his humongous efforts! https://www.justgiving.com/page/alex-shanks-1?utm_medium=FR&utm_source=CL

30/09/2025

Carly and her partner Martin recently ran the Great North Run for AMEND. Carly kindly shared a few words about the experience.

In September, my partner and I (and 60,000 other people) took part in the Great North Run, raising money and awareness for AMEND. MEN runs in my family, and AMEND has been a source of support, advice and information since we first learned about the condition. So when the chance came up to run the world's biggest half marathon and support the charity at the same time, it felt like too good an opportunity to miss.

It was brilliant to be able to run with my partner as well - we kept each other going through the hard parts. For me that was just after the first few miles. The excitement of the start, the Red Arrows flying past, and crossing the Tyne Bridge were incredible, but once that was behind us the realisation of how far we had to go definitely kicked in!

One of the most emotional parts of the day was seeing why people were running - there were names, photos and messages on t-shirts - some fundraising, others remembering loved ones. It was a reminder of how many personal stories were woven into the day, as well as the scale of the event - even ten miles in we were still weaving through people.

The support from the crowd was amazing. People lined the streets the whole way, cheering, giving high-fives, and handing out all manner of foods to keep us going til the finish line - the ice pops were a personal highlight, and the beer was surprisingly hard to drink while running. The final stretch was wall to wall people cheering us on, which made crossing the finish line feel epic :) I've never been part of anything like it.

We're delighted to have raised £624 (including gift aid) for AMEND, and to have raised awareness of the charity through the conversations that we've had in the run up. And yes, I am still amused that the finishers shirt and medal have the wrong river on them - though as it's Sunderland, my Geordie partner found that a bit less funny.

Thank you both so much! If anyone is interested in running for AMEND in 2026 in any of the Great Run company events, please do let Helen in the office know. https://www.greatrun.org/events/

Address

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

Opening Hours

Monday	9am - 5pm
Tuesday	9am - 5pm
Wednesday	9am - 5pm
Thursday	9am - 5pm
Friday	9am - 5pm

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.