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.

📣 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!

Our next London marathon runner was Molly; here is Molly story: My London Marathon 2026 experience was nothing short of ...
27/05/2026

Our next London marathon runner was Molly; here is Molly story:

My London Marathon 2026 experience was nothing short of amazing. I had such an overwhelming weekend, with the love and support from my family and friends who came to watch and those supporting at home too with messages and voice notes of encouragement.

The course was like nothing I’ve ever raced in before and creating awareness for AMEND during one of the Majors was truly incredible. I felt privileged to wear the vest.

I was so pleased to finish in 3hr59 but ultimately raising just over £500 for AMEND was a huge achievement and I hope to continue raising money and awareness for such an important charity!

Thanks so much Molly from all of us, I hope you have now fully recovered.
🏃‍➡️🏅🏃

Our next London marathon runner was Laura, here is Lauras experience of the day: The day was amazing, I really enjoyed ...
22/05/2026

Our next London marathon runner was Laura, here is Lauras experience of the day:

The day was amazing, I really enjoyed it, it was my second one, but this one was a much better experience. My day started with me feeling tired having had a very unsettled night with my 11-month-old (Finley) but the adrenaline soon kicked in, and I was ready for the day. My partner and two eldest come up to cheer me on which was great especially with the jelly babies and rehydration drink they gave me as it was a very hot day, and most of my training had had been done earlier in the day with much cooler weather. I also had family and friends around the course shouting me on which was a great boost. I finished in 5:00:14 and feel I certainly have to do it again to get that under 5 hours so have entered the ballot.

The support with donations has been so kind and really made the day even more special.

AMEND charity will be a great support for us, as although my partner has MEN2A, we are just at the start of our journey with our 11 month old and to have access to information and a community will be invaluable.

Thank you so much from all of us Laura. Good luck with the ballot!

Recently we had 4 runners take part in the London Marathon running for AMEND. We would like to share their experience of...
21/05/2026

Recently we had 4 runners take part in the London Marathon running for AMEND. We would like to share their experience of the day with you. Up first is Gary and here is his story:

I am absolutely thrilled to have completed the 2026 TCS London Marathon! I crossed the finish line with an official time of 5 hours and 5 minutes.

It was easily one of the toughest physical challenges I’ve ever faced. There were miles toward the end where absolutely everything hurt and my legs wanted to give up but crossing that finish line is a feeling I will never forget. However, the achievement I am most proud of is the fundraising. Thanks to the overwhelming generosity of my supporters, I managed to raise over £1,000 for AMEND! This is the most I have ever raised for a charity, and supporting such an important cause means the absolute world to me. After learning about the charity due to my 2022 diagnosis, I couldn't think of a better charity to raise funds for.

I would like to thank everyone who sponsored me, cheered me on, tracked me on the app, or sent messages of encouragement.

Thank you so much from all of us. Unfortunately, we do not have any places in next years event but if anyone else wants to run for AMEND please keep a close eye on our website as all future fundraising opportunities are listed there https://www.amend.org.uk/fundraisers-and-supporters/fundraising-opportunities/fundraising-uk/

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