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.

Our next online peer support meeting is being held via Zoom on Thursday 12th November 7-9pm. These meetings are very ...
02/11/2026

Our next online peer support meeting is being held via Zoom on Thursday 12th November 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 Charmaine for 2 hours of informal chat and meet others in similar circumstances.

One recent attendee of a peer support meeting said, “The openness that everyone was able to discuss and learn about their condition and hear about others. I took away a lot of information I did not know previously”. Why not come along and meet others who know how you feel?

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 patient information book about inherited paraganglioma syndromes has been updated in line with various recent guid...
20/10/2026

📣 Our patient information book about inherited paraganglioma syndromes has been updated in line with various recent guidelines and is available to download for free from our website.

Thank you to our Medical Advisory Team and to specialist contributor, Honorary Consultant ENT/Head and Neck Surgeon, Mr Paul Nankivell (QEHB), for helping us to expand the head and neck paraganglioma section.

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

AMEND is collaborating with ADSHG and other patient groups on this initiative to improve safety for those with adrenal i...
20/10/2026

AMEND is collaborating with ADSHG and other patient groups on this initiative to improve safety for those with adrenal insufficiency. Please help by visiting the Addison's Disease Self-Help Group website and getting involved!

Our next Great South runner is Amber. Amber told us ' Following my MEN1 diagnosis in February, I have found AMEND an inv...
12/10/2026

Our next Great South runner is Amber.

Amber told us ' Following my MEN1 diagnosis in February, I have found AMEND an invaluable source of information and comfort.
Training for the Great South Run has made me fall back in love with running and has been a great way to improve my mental health whilst I await my upcoming parathyroidectomy. I have had great support from both my family and friends, and I am now excited for the run and to raise money for AMEND.

If you would like to donate to Amber here is a link to her fundraising page.
https://www.totalgiving.co.uk/mypage/amber

Good luck and a big thank you from all of us Amber!
🏃‍♀️👟🎽🤞

Our next Great South runner is Katie. Katie said 'In July 2019, I lost my beautiful mum to Adrenocortical Carcinoma (AC...
09/10/2026

Our next Great South runner is Katie.

Katie said 'In July 2019, I lost my beautiful mum to Adrenocortical Carcinoma (ACC). This cancer is so rare that it affects just one in a million people. My mum truly was one in a million in every sense of the word, and I have decided to lace up my trainers once again to run 10 miles in her memory.
On Sunday 18th October 2026, I will be running the Great South Run. I’ll be thinking of her every step of the way, and I know that every penny raised provides a lifeline to the ACC community.
I’ll do my best to make her proud and raise as much as I can for such an incredible charity.

If you would like to donate to Katie here is a link to her fundraising page.
https://www.totalgiving.co.uk/mypage/mum-miles-amend

Good luck and thank you Katie!
🏃‍♀️👟🎽🤞

AMEND has 4 runners taking part in the Great South Run which is being held on Sunday 18th October. We would like to intr...
08/10/2026

AMEND has 4 runners taking part in the Great South Run which is being held on Sunday 18th October. We would like to introduce you to a few of our runners this week.

First up with have Martin. Martin explained that he is undertaking the 10-mile challenge for his stepson Neil who was diagnosed with a very rare Adrenal Cancer (ACC) in January 2023 (aged 31). This has changed Neils life dramatically. He has gone through chemotherapy treatment and operations. He continues to show courage and resilience living with this disease.

If you would like to donate to Martin and hear a little bit more about why he is running here is a link to his fundraising page.
https://www.totalgiving.co.uk/mypage/martin-gsrun2026-fundraising

Good luck and thank you Martin!
🏃‍♀️👟🎽🤞

📣 New survey exploring people's experiences when trying to access professional mental health supportCharities like AMEND...
07/10/2026

📣 New survey exploring people's experiences when trying to access professional mental health support

Charities like AMEND are filling the gaps providing mental health support for people with rare conditions. So, our Counselling Service provider, Rareminds, wants to find out more about people's experiences if you have tried to access mental health support through the NHS. Please take part in this survey by 30 November to help them (and us) advocate for the need for rare disease mental health support.

📲 https://www.smartsurvey.co.uk/t/RMSurvey2026/


Last month Hannah ran an incredible 60km ultra marathon in the Lake District raising over £1100 for AMEND. Hannah said...
06/10/2026

Last month Hannah ran an incredible 60km ultra marathon in the Lake District raising over £1100 for AMEND.

Hannah said 'the last couple of years have been a rollercoaster journey of scans, biopsies, diagnosis, genetic testing, health anxiety & learning to live with uncertainty. I was diagnosed with a Paraganglioma Tumour in my Vagus Nerve.
Following my Radiotherapy treatment, I wanted to do something to raise vital funds for the charity AMEND. I completed a 60km Ultramarathon in the Lake District almost one year after my treatment.
AMEND has been a fantastic lifeline, I was able to access resources & information early on in my diagnosis and accessed fantastic counselling, which I am forever grateful for.

A massive thank you from all of us at AMEND on your achievement.
https://www.totalgiving.co.uk/mypage/5valleysultrahannah

Hannah has also previously shared her patient story if you would like to read about her Paraganglioma diagnosis and treatment.
https://www.amend.org.uk/patients/endocrine-diseases-information/ppgl-syndromes/ppgl-syndromes-patient-experience-stories/

Its nearly time for our next online peer support meeting. The meeting is being held via Zoom on Thursday 15th October 7-...
05/10/2026

Its nearly time for our next online peer support meeting. The meeting is being held via Zoom on Thursday 15th October 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!

Address

Tyler House, 58-66 Morley Road
Tonbridge
TN9 1RA

Opening Hours

Monday 09:00 - 17:00
Tuesday 09:00 - 17:00
Wednesday 09:00 - 17:00
Thursday 09:00 - 17:00
Friday 09:00 - 17:00

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