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

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.

20/03/2026

Come on runners - WE NEED YOU!

We still have 5 spaces in the Great Bristol Run 10k which is being held on Sunday 10th May.

Please feel free to share this post with friends and family to see if anyone is interested in taking a place.

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
🏃‍♂️👟🎽🏃‍♀️

19/03/2026

Introducing our next London marathon competitor, Molly! Molly managed to secure a place through the ballot and chose to run for AMEND in next month's marathon.

Molly is fundraising for AMEND, as two of her very close friends live with MEN. She hopes to raise funds for the families supporting those with MEN and wants to raise as much awareness as she can for the charity overall.

If you would like to donate to her challenge here is a link to her fundraising page. Good luck Molly!

https://www.totalgiving.co.uk/mypage/mkwattrus =

🏃‍♀️👟🎽🤞

13/03/2026

Save the Date – Registration Now Open

Neuroendocrine Life Alliance Patient Summit
📅 Saturday 6 June 2026
📍 Crowne Plaza, Sheffield
🕘 9:30am – 5:30pm

In 2025 Neuroendocrine Cancer UK and AMEND launched the Neuroendocrine Life Alliance, a new collaboration bringing together our organisations to strengthen the voice of the UK neuroendocrine community.

To mark this partnership, we are hosting a Patient Summit bringing together patients, families, and experts for a day of information, support, and connection, with sessions covering topics such as genetics, active surveillance, wellbeing, nutrition, and research updates.

Registration is now open – we would love for you to join us.

Please register using the following link: https://www.amend.org.uk/patients/amend-support-services/events/national-events/2026-annual-patient-information-day/

10/03/2026

We have had to reschedule our first in person peer support meeting. The new date is Saturday 18th April from 12– 2pm at The Curious Cow, Killinghall, Harrogate, HG3 2AP

Join our volunteer, Emily for 2 hours of informal discussion and peer support. These meetings are very informal and supportive. Anyone affected by MEN or PPGL syndromes can attend. Patients, family, carers, friends – all are welcome!

One recent attendee of a peer support meeting said, “It was so wonderful to connect with others who understand”. Why not come along and meet others who know how you feel?

Please register for the meeting using the following link.
https://www.amend.org.uk/patients/amend-support-services/events/regional-events/

04/03/2026

Our first in person peer support meeting of 2025 is being held on Saturday 21st March from 12– 2pm at The Curious Cow, Killinghall, Harrogate, HG3 2AP

Join our volunteer, Emily for 2 hours of informal discussion and peer support. These meetings are very informal and supportive. Anyone affected by MEN or PPGL syndromes can attend. Patients, family, carers, friends – all are welcome!

One recent attendee of a peer support meeting said, “It was so wonderful to connect with others who understand”. Why not come along and meet others who know how you feel?

Please register for the meeting using the following link.
https://www.amend.org.uk/patients/amend-support-services/events/regional-events/

03/03/2026

Congratulations to former AMEND trustee and outgoing SfE Nurses’ Committee Chair (among other positions), Clinical Nurse Practitioner, Louise Breen, on her award of the Nikki Keiffer Medal 🥇 Truly inspiring to hear about Louise’s incredible life and work. 💛.

02/03/2026

We’re off to a strong start at the Society for Endocrinology’s BES2026 conference in Harrogate this week with a special Patient and Public Involvement and Engagement session on Sunday and an update on the registry for metastatic and , the advisory committee of which AMEND is a member.

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/

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

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/

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.