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.

On Rare Disease Day we remember all those we have lost to or with rare diseases. Together we support one another knowin...
28/02/2026

On Rare Disease Day we remember all those we have lost to or with rare diseases. Together we support one another knowing that they will always be kept in our hearts and will always be with us. Together we advocate to address the inequities in access to expert care, and for more research into and treatments for our rare diseases for current and future affected families.

27/02/2026

Many of our children benefit from an earlier diagnosis than others in the family. Although this provides opportunities to catch genetic syndrome tumours early and improve prognosis, there are also significant challenges in ensuring that young adults comply with their hospital surveillance programme and appointments. Over 25% of young adults disengage with their health care programme during transition - the period of change from children's to adult services. We aim to encourage our young adults to stay in healthcare services. We have a community of young adults talking regularly to one another, as well as information resources on a variety of topics relevant for our younger audiences such as our videos, filmed during the 2020 pandemic lockdown. Love our kids! 💛

📲 https://www.amend.org.uk/patients/young-adults/

25/02/2026

With just 3 Days until Rare Disease Day, here's a quick guide to some terminology and the varied symptoms that may be associated with the different and rare cancer and tumour types in our patient communities. Diagnosis can be challenging when symptoms are varied, episodic, or vague, but should never be ignored when they persist. What was your experience of symptoms and diagnosis?

For more information on the diseases, tumours, cancers, and symptoms experienced by our patient community, visit our website and explore.

📲 https://www.amend.org.uk/

AMEND provides information resources and support services for a variety of rare disease patient communities, including m...
21/02/2026

AMEND provides information resources and support services for a variety of rare disease patient communities, including multiple endocrine neoplasia syndromes, phaeochromocytoma and paraganglioma syndromes, and adrenocortical cancer.

Common unmet needs through all these communities are delays to diagnosis resulting in poorer prognosis, lack of access to psychological support from the point of diagnosis, challenges accessing expert medical care, and a lack of effective treatments.

AMEND works hard to advocate for our communities on and every day. You can read and watch these and more patient stories on our website.

📲 https://www.amend.org.uk/patients/patient-stories/

Please consider a donation to help us continue our work for these rare disease communities by texting AMEND to 70470

👕 There is still time to get ready for Rare Disease Day while supporting AMEND at the same time. Browse our awareness m...
19/02/2026

👕 There is still time to get ready for Rare Disease Day while supporting AMEND at the same time. Browse our awareness merchandise in our Teemill store where profits go to support our work and services. Strut your stuff on the 28th - order now.

📲 https://amend.teemill.com/awareness/

📣 We're getting ready for Rare Disease Day! Many members of our communities want to hear the experiences of others with...
17/02/2026

📣 We're getting ready for Rare Disease Day! Many members of our communities want to hear the experiences of others with their rare disease. We've made it easy to write down your experiences by using our template, so why not give it a go, especially if you find it helpful to read the experiences of others yourself!

Download our template here: https://www.amend.org.uk/patients/patient-stories/

You can also donate by texting AMEND to 70470 to support our small charity

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

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Tonbridge
TN9 1RA

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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.