Association for Multiple Endocrine Neoplasia Disorders - AMEND

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/

18/12/2025

16/12/2025

Draw takes place tomorrow, Wed 17 Dec! Buy now at https://www.amend.org.uk/product/barri-affle-ticket/

09/12/2025

'US deal secures UK’s medicines access and supply for tens of thousands of NHS patients, with a wide range of ground-breaking new treatments to reach NHS front-line quicker'

https://www.gov.uk/government/news/landmark-uk-us-pharmaceuticals-deal-to-safeguard-medicines-access-and-drive-vital-investmentfor-uk-patients-and-businesses

29/11/2025

This year we have a new online way to give to AMEND, where you can donate any amount and "decorate" a virtual Christmas tree by choosing a light, bauble, or gift. Show your support this festive season by donating via our tree.

Donate any amount and "decorate" our virtual tree by choosing a light, bauble, gift or even the star on the top! You can leave a message to a loved one and a photo if you wish. Your contribution will be showcased on the tree, spreading cheer and inspiration to all who visit.

You can also send your loved one an e-card to see their Christmas Message on our tree and let them know you are thinking of them.

Donate here!
https://visufund.com/amend-christmas-tree-fundraiser
🎅🌲🎁

28/11/2025

‘Barry’ and ‘Barrioke’ lovers get your raffle tickets now! Our Celebrity Patron, Shaun Williamson, has agreed to record a festive, personalised, Christmas shout-out for the winner of our Christmas raffle - now nicknamed our Barri-affle! Enter now to be in with a chance to win a message for you, your loved one, or even your whole family!

You have until midday on Wednesday 17th December to buy your tickets, and the draw will take place later on the same day with the winner notified immediately. Tickets are £5 each. AMEND will coordinate your request with Shaun.

Buy tickets here https://www.amend.org.uk/news/

🎅🌲🎁

27/11/2025

PLEASE READ!
With Black Friday and Christmas rapidly approaching many of you will be making a lot of online purchases over the coming weeks.

You can do something extraordinary, by doing the ordinary - shopping online. No extra time, no extra effort, no extra cost.

When you shop online with participating retailers, they'll donate part of what you spend to your chosen cause. Whether you shop on your phone, laptop or tablet, you can earn free cashback donations for your cause.

The retailer just needs to know you are an easyfundraiser to give a donation, and they know this if you visit them from the easy fundraising website, app or Donation Reminder.

The Donation Reminder is for mobiles, tablets and PC’s. It will pop up when a donation is available as you shop. You need to keep the easy fundraising app installed on your phone to power the donation reminders.

Helen in the office says she cannot stress how easy it is to use and raise funds for AMEND at no cost. Helen raised over £4 last week on 2 purchases alone! Imagine if all our members did this?! Edited to add that Helen has since raised another £2 for free!

Sign up here.
https://www.easyfundraising.org.uk/panel/
🎅🌲🎁

15/11/2025

‼ Live Webinar on Medullary Thyroid Cancer!

Time is running out to register for our webinar on sporadic MTC which will be held via Zoom on Wednesday 19th November from 19:00-20:30. This event is FREE so register now so you don't miss out on quizzing our expert medical speakers.

📲https://us02web.zoom.us/webinar/register/WN_pocKAaNEQXK7qGd94GLpuw #/registration

10/11/2025

📣 Today is NET Cancer Day

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

📲 https://incalliance.org/ncd-2025/