Association for Multiple Endocrine Neoplasia Disorders - AMEND

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 p

rovide 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.

Our next Great North runner is Jodie. Jodie said ‘Choosing AMEND as the charity for my first half marathon was an easy ...
08/09/2026

Our next Great North runner is Jodie.

Jodie said ‘Choosing AMEND as the charity for my first half marathon was an easy decision. After members of my family were directly affected by the MEN1 gene variant and developed multiple tumours over the course of just a few years, AMEND quickly became a charity we all could turn to for guidance and information. Before this, I had never even heard of MEN1. Their resources and support have been amazing during a tough time.’

Jodie has recently been told she is a carrier of the MEN1 gene, along with her brother, sister, and cousins.

If you would like to donate to Jodie and read a little bit more about why she is running here is a link to her fundraising page.
https://www.totalgiving.co.uk/mypage/jodiesamendfundraisergnr

Thank you so much Jodie!
🏃‍♀️👟🎽🤞

AMEND has 4 runners taking part in the Great North Run which is being held on Sunday 13th September. We would like to in...
07/09/2026

AMEND has 4 runners taking part in the Great North Run which is being held on Sunday 13th September. We would like to introduce you to our runners this week.

First up with have Gemma and Nicki. Gemma is an AMEND trustee and she is running the race with her sister-in-law Nicki (who is also a long-time supporter and fundraiser for our charity). Nicki sadly lost her husband Rob unexpectedly in 2019 from a pheochromocytoma and Gemma's husband, John (Rob’s brother) discovered in 2021 he also had the gene mutation and has since been diagnosed with a tumour. Both Gemma and Nicki have confessed to not being runners and have been training hard for the event.

If you would like to donate to Gemma and Nicki and hear a little bit more about why they are running here is a link to their fundraising page.
https://www.totalgiving.co.uk/mypage/theswins

Good luck to you both!
🏃‍♀️👟🎽🤞

Today we say a huge thank you to our Outgoing Chair of the Trustee Board, Gill Masters, and a big welcome to our Incomin...
01/09/2026

Today we say a huge thank you to our Outgoing Chair of the Trustee Board, Gill Masters, and a big welcome to our Incoming Chair of the Trustee Board, Graeme Cohen, who begins his first term as Chair.

Both have been involved as Trustees of AMEND for several years, and both have been active and instrumental in helping guide the work of AMEND, including developing our latest strategy.

Gill will be continuing her roles as a Trustee and as a Peer Support Volunteer.

For more about Graeme and Gill, and on the role of the Trustee Board more generally, please visit our website.

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

📣 This week is Phaeo Para Awareness WeekPhaeochromocytomas are tumours of the inner part of the adrenal gland and also k...
26/08/2026

📣 This week is Phaeo Para Awareness Week

Phaeochromocytomas are tumours of the inner part of the adrenal gland and also known as adrenal paragangliomas. Other paragangliomas can occur in cells that form part of the nervous system that runs between the base of the skull and the pelvis. Any of the tumours can make extra hormones that cause symptoms and all are considered to have 'malignant potential' though many may not become cancer. Many paragangliomas are associated with a genetic syndrome that runs in families caused by changes in genes such as the SDH or RET gene.

For more information and to find support, please visit AMEND's website:

📲 https://www.amend.org.uk/patients/endocrine-diseases-information/ppgl-syndromes/

PHAEO PARA AWARENESS WEEK - 24-28 AUGUSTToday marks the start of the 2026 Phaeo Para Awareness Week and to kick off, we ...
24/08/2026

PHAEO PARA AWARENESS WEEK - 24-28 AUGUST

Today marks the start of the 2026 Phaeo Para Awareness Week and to kick off, we wanted to share the inspiring story of Hannah who has the hereditary paraganglioma syndrome, SDHC.

Hannah is a firefighter in the Northeast of the UK. Her Christmas present in 2022 was to find a lump in her neck. Read about how Hannah reacted to her diagnosis and later, her radiotherapy treatment.

We think she's completely inspiring!

Find this and other patient stories on our dedicated Phaeo Para website:

📲 https://phaeoparasupport.org.uk/patients/patient-experience-stories/

Good news – despite being told we had no London marathon places for 2027 we have just been allocated 3 places in next ye...
20/08/2026

Good news – despite being told we had no London marathon places for 2027 we have just been allocated 3 places in next year's Saturday London marathon. This is being held on Saturday 24th April 2027.

The London Marathon is an iconic 26.2 mile course set around the river Thames. Over 45,000 runners will tackle the closed road course starting in Greenwich and finishing on The Mall taking in iconic sights such as the Cutty Sark, Tower Bridge, Big Ben, and Buckingham Palace along the way.

AMEND has 3 places available in the race. The fundraising target is a minimum of £2000 (which has always been exceeded). If you are interested in one of AMEND’s spaces, please send your expression of interest, why you want to run and fundraise for AMEND and a realistic estimate of the total funds you will raise to Helen in the office no later than 18th September [email protected]

🏃‍♂️🏃‍➡️🎽🥈

Amelia Ternan is bravely doing an abseil down the Spinnaker Tower in Portsmouth on August 16th in memory of her husband ...
05/08/2026

Amelia Ternan is bravely doing an abseil down the Spinnaker Tower in Portsmouth on August 16th in memory of her husband Marvin who sadly died earlier this year from ACC. She is undertaking the challenge on what would have been their 8th wedding anniversary.

If anyone would like to sponsor Amelia in her endeavour and to read more about their story you can do so here. https://www.totalgiving.co.uk/mypage/for_marvin

The fundraising Amelia and her family have done so far has been phenomenal and we are enormously grateful to them. Huge thanks to Amelia for doing this to support the work of AMEND and ACC Support in memory of Marvin.

Our next online peer support meeting of is being held next week on Thursday 6th August 7-9pm. These meetings are very ...
28/07/2026

Our next online peer support meeting of is being held next week on Thursday 6th August 7-9pm.

These meetings are very informal and supportive. Anyone affected by MEN or PPGL syndromes can attend. Patients, family, carers, friends – all are welcome!

Join volunteer Gill 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/amend-support-services/events/regional-events/

It's good to talk!

Its nearly time for our next online peer support meeting. The meeting is being held via Zoom on Thursday 18th June 7-9pm...
08/06/2026

Its nearly time for our next online peer support meeting. The meeting is being held via Zoom on Thursday 18th June 7-9pm.

These meetings are very informal and supportive. Anyone affected by MEN or PPGL syndromes can attend. Patients, family, carers, friends – all are welcome!

Join 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/amend-support-services/events/regional-events/
It's good to talk!

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