Association for
Multiple Endocrine
Neoplasia Disorders

AMEND’s European Work

AMEND represents patients' voices within 2 European Reference Networks (ERNs) that aim to improve access to expert care throughout member states.  The two ERNs, ENDO-ERN and EURACAN, cover all the diseases and disorders that AMEND covers, as well as a few additional rare diseases.  All this is at risk thanks to Brexit.

NET Cancer Day Coffee Club

NET Cancer Day is held annually on November 10th.  Hold a NET Cancer Day Coffee Club this November at your workplace or home for friends and family, and we'll send you a free Netty Zebra NET Cancer Day mug!

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AMEND Launches Regional Support Groups

Thanks to our 8 excellent new Regional Volunteers, peer support will be made available more locally to many people living in the UK.  Each Regional Volunteer will organise regular peer support group meetings in their region, which they will facilitate, and which will also provide sign-posting to AMEND's information resources and other support services.

Click here to learn more

UK MEN1 & PNET Research Registry Operational

The UK's National Research Registry for MEN1 and Pancreatic NETs is now operational.  The Registry team will be creating a Database of patients' medical information to be used in future research.  If you are a UK MEN1 patient and would like to find out how to register, please visit our webpage.  AMEND is delighted to be working closely with the team on this vital research initiative.

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Yorkshire 3 Peaks Team Smashes Challenge!

On the weekend of 30 June and 1 July, AMEND's 13-strong team battled 3 mountains in searing temperatures and no shade.  Nevertheless, despite blisters and aching muscles, they did it and in the process managed to raise a whopping £13,000! Massive thanks to our Team, to everyone who sponsored them. Thanks also to the Discover Adventure Leaders, Vik and Mel, and to our support doctor, Alison.

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Looking for volunteers aged 13-21

Aged 13-21 and have MEN1, MEN2A or MEN2B?  Free on the weekend of 6/7th October 2018?  Like Rollercoasters?  Come and volunteer for our Project Rollercoaster workshop on being a young adult with MEN to help us develop resources for this age-group.  Free day at the theme park is the reward!

Click here for more information

Black & Gold Ball 2018

You can now buy your tickets to AMEND's 15th Birthday party! The 2018 Black & Gold Ball will be held on Saturday 22nd September 2018, at the Amba Charing Cross Hotel in Central London. Tickets include a 3-course meal, 1/2 bottle of wine, welcome drink and dancing 'til late.  Save £40 when you book a table of 8.

Click here for more information and to book

Notice of 2018 AGM

Notice of AMEND's 2018 Annual General Meeting which will be held on Saturday 12th May at the NCVO,  8 All Saints St, London N1 9RL from 12:15pm.

For more information, click here

April Newsletter Sent to Members

UK Research Registry Now Collecting Data

The UK National Research Registry for MEN1 and pancreatic neuroendocrine tumours (pNETs) is now collecting patient data.  Patients can sign up to our specific mailing list in order to receive more information shortly about how to notify their specialists to get involved.  

Click here to sign up for further news

MEN1 and pNET Survey Launched

AMEND has launched a new survey today to find out what the patient information needs are of those with MEN1.  The short survey takes just 12-15 minutes to complete and will help us raise awareness of patients' needs with the medical profession.  Thanks in advance for your help.

Click here to take the survey

Free Patient Event for Sporadic MTC

7th July, 2018 - Central London AMEND will be holding it's first Information Day for all those affected by sporadic (non-hereditary) medullary thyroid cancer (MTC) on Saturday 7th July this year.  Thanks to a grant from SanofiGenzyme, the event is free to all patients, family members and carers, although tickets are limited in number.  The day will incorporate talks from medical experts and plenty of time to network with fellow patients.  Tickets are free including lunch and refreshments.

Click here to learn more and to book

Please Help With This Important Survey

If you have MEN1, MEN2a, MEN2b or MEN4, the European MEN Alliance (EMENA), of which AMEND is a member, invites you to participate in an important patient survey on Quality of Care throughout Europe.  Click to learn more.

Play the Unity Lottery and Support AMEND!

We are delighted to bring you the chance to play the weekly Unity Lottery.  There's £25,000 up for grabs every week, and AMEND receives 50% of every £1 spent so the more people who play, the more AMEND receives!

NICE Approves Cabozantinib for Metastatic MTC

Cabozantib, also known as Cometriq, made by Ipsen has been recommended by NICE to come off the Cancer Drugs Fund and into routine use.  AMEND was involved in submitting patient opinions into the Appraisal process during 2017.

AMEND awarded Big Lottery Fund grant

Thanks to funding from the UK Big Lottery Fund, AMEND can begin Project Connect, bringing people together for mutual support according to national region.

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2018 Annual Patient Information Day

This year's AMEND Patient Information will be held in central London on Saturday 12th May.  This event is FREE to patients, friends and families, and includes refreshments, lunch and a creche for those under 12 years of age.  This is always a popular event so early booking is advised!

Click here for more information and to book

Come climb with us

We are urgently seeking adventurous people to join us on a challenging but fun weekend tackling the Yorkshire 3 Peaks.  The event is raising money exclusively for AMEND and is run by Discover Adventure, who organised our 2012 Sahara Trek.  If you want a fitness goal and are free on the weekend of 30th June to 1st July, please join us!

Click here for more information

Happy Birthday AMEND!

2018 marks the 15th year of AMEND's existence.  There's lots going on throughout the year to celebrate our birthday, from special information events to wonderful fundraising challenges.  The beginning of the celebrations started with the launch of this, our brand new website.  Explore the site and get in touch if you would like to get involved!

Exciting fundraising opportunities!