Association for Multiple Endocrine Neoplasia Disorders - AMEND

14/04/2026

Its nearly time for our next online peer support meeting. The meeting is being held via Zoom on Thursday 23rd April 7-9pm.

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!

14/04/2026

📣 Take action following the discontinuation of hydrocortisone sodium phosphate by contacting your MP.
Your voice matters. Whether you live with adrenal insufficiency, or support someone who does, we need you to speak up by writing to your MP and help drive change.
This is more than a medication issue, it's a serious patient safety concern that puts lives at risk. In an adrenal crisis, every second counts. Sharing your personal experience helps MPs understand the real impact.
📝 Use ADSHG's ready-made template to email or post to your MP. It only takes a couple of minutes! ⤵️
https://loom.ly/yR0adyk
💻 Tip: We recommend downloading the letter template on a laptop or computer, where the download file is easier to locate than on a mobile phone.
The more people who contact their MP, the stronger our voice. Thank you for helping make change happen.

📣 Take action following the discontinuation of hydrocortisone sodium phosphate by contacting your MP.

Your voice matters. Whether you live with Addison’s or adrenal insufficiency, or support someone who does, we need you to speak up by writing to your MP and help drive change.

This is more than a medication issue, it's a serious patient safety concern that puts lives at risk. In an adrenal crisis, every second counts. Sharing your personal experience helps MPs understand the real impact.

📝 Use our ready-made template to email or post to your MP. It only takes a couple of minutes! ⤵️
https://loom.ly/yR0adyk

💻 Tip: We recommend downloading the letter template on a laptop or computer, where the download file is easier to locate than on a mobile phone.

The more people who contact their MP, the stronger our voice. Thank you for helping make change happen.

13/04/2026

Great advice from Dr Karan.

09/04/2026

Don't forget to book for our first in person peer support meeting on 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!

Please register for the meeting using the following link.

https://www.amend.org.uk/patients/amend-support-services/events/regional-events/

08/04/2026

Long time AMEND supporter Anthony O'Flaherty is riding the Etape Loch Ness on Sunday 26th April raising funds for our charity.

The Etape Loch Ness is Scotland’s largest and most iconic closed road cycle sportive taking place around iconic Loch Ness offering the chance to cycle 66 miles (106 km) on traffic free roads. The stunning 360° route around the loch starts and finishes in the Highland capital of Inverness with 900m of ascent.

Anthony is raising funds for AMEND as his son Gillie has MEN2b which will impact him throughout his lifetime. Anthony says that AMEND has been a lifeline to their family since he was diagnosed aged 3 years old.

If you would like to sponsor Anthony in this endeavour, please do take a look at his fundraising page.

https://www.justgiving.com/page/anthony-oflaherty-2?utm_medium=FR&utm_source=CL

Thanks so much from all of us for this huge undertaking!
🚵🚴🤞

03/04/2026

With just over 3 weeks to go until the London Marathon, Ed one of our runners is training hard.

Ed is running the 2026 London Marathon in support of AMEND and for his daughter, Isla who was born with MEN2B.

If you would like to donate to Ed 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/ed_dickson

🏃‍♀️👟🎽🤞

31/03/2026

📣 Today is World Radiotheranostics Day

Radiotheranostics uses radioactive substances to find cancer cells inside the body and then to deliver treatment directly to those same cells, and was first used in 1941 for thyroid cancer. One UK-approved radiotheranostic option is 177Lu-DOTATATE. This treatment combines a radioactive particle (lutetium-177) with a targeting molecule that seeks out somatostatin receptors, which are often found on neuroendocrine tumour cells. Others include MIBG (metaiodobenzylguanidine-131) and PRRT (Peptide Receptor Radionuclide Therapy). However, availability of radiotheranostics may vary by hospital and are typically offered as part of clinical trials or at specialised centres.

📲 Learn more here: https://worldradiotheranosticsday.com

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/