Association for Multiple Endocrine Neoplasia Disorders

In October 2014 AMEND made a submission on behalf of patients to the All Wales Therapeutics & Toxicology Centre in support of the appraisal for use of cabozantinib (Cometriq™) for metastatic medullary thyroid cancer (MTC).

We are pleased to report that the AWTTC confirmed on Tuesday 10th February, that the appraisal received Ministerial approval at the end of January 2015, and that cabozantinib will be available for use in patients with metastatic MTC by the end of April 2015.

Appraisal Lead, Dr Claire Davis expressed her thanks to AMEND for the submission: "I would like to thank you directly for your help with obtaining patient/carer views for the cabozantinib (Cometriq®) appraisal.  The information provided really helped to inform members of the appraisal groups."

Registered members of AMEND who have used our free Counselling Service can help us to maintain and develop the service by telling us what you think.

Service user input is incredibly valuable in this regard as well as in helping to source funding to ensure that we can continue to provide the service.

Please take a few short minutes to complete our online survey.

Click here for more information on the service.

Click here to access the survey.

Thank you


Thanks to the generosity of the Organising Committee, AMEND were privileged to be able to attend the 2014 International Scientific Workshop on MEN in the beautiful city of Vienna in Austria at the end of September.  It provided a fantastic opportunity to continue working with our European patient group colleagues on behalf of the European MEN Alliance (EMENA).

We have now produced a lay summary of some of the most interesting research presented at the meeting.  The summary has been reviewed by the AMEND Medical Advisory Team.

Click here to read the summary.

AMEND's UK Annual Information Day in 2015 will be held at the Thackray Medical Museum in Leeds, North Yorkshire on Saturday 9th May.

There will be something for everyone, including a creche for the younger family members and special information sessions and activities for the teenagers.  A range of basic to advanced information sessions for adults on multiple endocrine neoplasias 1, 2a and 2b will occupy our morning, with our popular Ask the Expert Panel session in the afternoon.  There will be plenty of time for socialising with fellow patients, carers and AMEND staff and volunteers throughout the day as well as an additional opportunity to attend an informal dinner in the evening.

We do hope you can join us for our popular free event at this fascinating venue.

Click here to learn more and book your spaces now!


The latest AMEND newsletter for members is now available to view on this website.

As usual it is packed with exciting news, project updates, My Story and much more!

Members are reminded to log in first to view the latest newsletter.

Membership is free if you have not yet joined.

We hope you enjoy reading this latest edition.

AMEND's December members' newsletter is now available to view in the Resources section of our website.  You must log on to access this.  If you are not already a member, you can join for free by clicking here.

This quarter, there is news about AMEND's 2015 Research Awards, information from a variety of events in the UK and USA, research updates, fundraising updates, and an MEN2b My Story.  As ever, there is also much, much more....

We hope you enjoy reading your newsletter!

Thyroid cancer is being diagnosed in greater numbers than ever before.

Differentiated thyroid cancer can affect anyone in the general population and if found early, can often be treated successfully.

Undifferentiated medullary thyroid cancer affects people with MEN type 2 and treatment differs from that for other thyroid cancers.

Find links to further information and advice on what you can do, including Check Your Neck, on our webpage.