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.

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/

A very big thank you to Connor who ran the Great Bristol 10k last Sunday for AMEND. Connor said ‘Running the Bristol Gre...
14/05/2026

A very big thank you to Connor who ran the Great Bristol 10k last Sunday for AMEND.

Connor said ‘Running the Bristol Great Run for AMEND was an amazing experience. I ran in support of my sister, who lives with MEN1, and I’m so grateful to everyone who donated and helped me raise money for such an important charity.

The atmosphere all around Bristol was incredible. The whole city was buzzing, and it made me proud to call Bristol my home’.

Connor raised a fabulous £270 but his fundraising page is still open if anyone wants to give it a boost.

https://www.totalgiving.co.uk/mypage/run-for-amend

Thank you so much Connor from all of us! Connor did tell me that he is now considering a half marathon next year so watch this space! 😉

Meet Claudia. Claudia is running the Great Manchester 10k on the 31st of May. Claudia shared why she is running the race...
13/05/2026

Meet Claudia. Claudia is running the Great Manchester 10k on the 31st of May. Claudia shared why she is running the race and fundraising for AMEND.

‘I’m running the 10k race for AMEND because this charity is incredibly close to my heart. My nan had MEN1, and sadly it has since been passed down through two generations of our family. Taking part is my way of raising awareness, supporting others affected, and giving back to a charity that means so much to us.’

Thank you and good luck Claudia!

If anyone would like to sponsor Claudia here is her fundraising page. https://www.totalgiving.co.uk/mypage/claudia

Also, if anyone wants to run the Manchester 10k we still have a few places left please contact [email protected] . Please feel free to share with friends and family.

🏃🥈🏃‍➡️🤞

🚑 Preventing and Managing Adrenal Crisis – your experience mattersPeople living with, or affected by, adrenal insufficie...
07/05/2026

🚑 Preventing and Managing Adrenal Crisis – your experience matters

People living with, or affected by, adrenal insufficiency, including Addison’s, are the experts in their own rare condition. Your personal story is the most powerful tool for driving change.

We need your experiences to drive improvement. You can help;

▪️Show the real-life impact of rare conditions, humanizing statistics and data

▪️Inform better policy: highlight the gaps in the system, such as lack of protocols and lack of coordinated care providing evidence for the changes we campaign for.

▪️Turn any negative experiences into positive change.

▪️Build community: connecting you with others, reducing isolation and fostering a strong, united adrenal insufficiency community.

In collaboration with; City St George, ADSHG, AMEND, The Pituitary Foundation, Alex, Living with CAH, the Society for Endocrinology

Learn more and participate:
📲 https://www.amend.org.uk/adrenal-crisis-patient-survey/

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