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.

The Great Manchester 10k is taking place on Sunday 31st May. We still have 4 places available in this run.Join tens of t...
07/02/2026

The Great Manchester 10k is taking place on Sunday 31st May. We still have 4 places available in this run.

Join tens of thousands of runners and take to the streets of Manchester to take on the city’s most loved AJ Bell Great Manchester Run. And in true Mancunian style, it’s a party from start to finish, with a high-energy soundtrack, live music and entertainment zones at every turn – plus, some of the loudest and most enthusiastic local support seen anywhere in the UK.

The 10k starts on Portland Street, near the junction with Oxford Street, and finishes on Manchester’s iconic Deansgate. Check out the route map in our post!

Please feel free to share this with friends and family.

If you would like to participate in this event and raise funds for AMEND (target of £200 plus a free AMEND running vest) please let Helen in the office know helen@amend.org.uk
🏃‍♂️👟🎽🏃‍♀️

Today is World Cancer Day, and the day that the National Cancer Plan for England was published, providing a strategy for...
04/02/2026

Today is World Cancer Day, and the day that the National Cancer Plan for England was published, providing a strategy for cancer services for the next 10 years. Rare and uncommon cancers like ours finally have their own chapter with 13 commitments to improving diagnosis, treatment, care and research among others. Children and young people's cancer also gets a welcome mention.

Read our short summary and find links through to the report and a relevant summary via our website:

📲 https://www.amend.org.uk/national-cancer-plan-for-england-launched/

ℹ️ Did you know that every year, more than 6,000 people in England are diagnosed with - that’s one person every 90 min...
04/02/2026

ℹ️ Did you know that every year, more than 6,000 people in England are diagnosed with - that’s one person every 90 minutes? It’s frequently misdiagnosed and missed and can remain invisible for years. On average it takes four and a half years to reach a diagnosis.

On the charity Neuroendocrine Cancer UK (NCUK) has launched ‘The invisible cancer’, a report to shine a spotlight on a disease that many of us have never heard of and yet the patients who have it experience intense fear and isolation due to delays in diagnosis and inconsistent care. We must understand this invisible disease better. In our support for their work, please share this post and have a read of the report here

📲 https://bit.ly/4a8r4aw

We still have 5 spaces in the Great Bristol Run10k which is taking place on Sunday 10th May. The 10k starts on Rupert St...
03/02/2026

We still have 5 spaces in the Great Bristol Run10k which is taking place on Sunday 10th May.

The 10k starts on Rupert Street and finishes on Anchor Road. Check out the route map in our post!

The Great Bristol Run is known for being relatively flat – perfect if you’re looking for a new PB. It is a nice and varied route, taking in Bristol’s famous rivers, green spaces and urban landmarks.

Here are some pictures of our runners last year enjoying the run in the Bristol sunshine!

Please feel free to share this with friends and family.

If you would like to participate in this event and raise funds for AMEND (target of £200 plus a free AMEND running vest) please let Helen in the office know helen@amend.org.uk
🏃‍♂️👟🎽🏃‍♀️

🚀 We have lift off!AMEND's smartphone app for members is here! Now you can have the information you need, even when y...
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/

Meet Ed! Ed is running the 2026 London Marathon in support of AMEND and for his daughter, Isla.Isla was born with MEN2B....
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/

WE NEED YOU! We have places in a number of running events in 2026.Great Bristol 10k - Sunday 10th MayGreat Manchester 10...
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

🏃‍♀️🏃🎽👟🥈

Address

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

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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

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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.