Association for Multiple Endocrine Neoplasia Disorders

We are delighted that the UK's National Institute for Health Research (NIHR) has today approved AMEND's application to become a non-commercial partner with respect to the AMEND Research Fund.

This exciting development now means that appropriate research studies funded through the Research Fund will automatically be eligible for NIHR Clinical Research Network (CRN) support and therefore entitled to:

  • Use the NIHR Coordinated System for gaining NHS Permissions (NIHR CSP), and
  • Access NHS support via the NIHR Clinical Research Network.

Visit our webpage for more information on this and the AMEND Research Fund itself.

The deadline for 2013 applications to the AMEND Research Fund (worth up to £10,000) is 30 April.



The US Food and Drug Administration (FDA) has issued a warning regarding 150mcg Synthroid tablets manufactured by Abbott Laboratories.  Abbott Laboratories contacted the FDA to admit to a labelling error which means that over 28,000 90-tablet bottles out in circulation actually contain 75mcg tablets rather than the stated 150mcg.  Countries affected by this error are the USA and Puerto Rico.  For further information please click here.


AMEND's December newsletter is now available to view for all registered members.  Please go to 'Newsletters' under the 'Publications' heading.  The 4th Quarter newsletter will only appear once you have logged in although you will be able to view older editions without logging in.  This quarter we have a special Sahara edition reporting on the success of our Maniac Endocrine Nomads, a MEN1 my story and an update on our UK Lottery Funded Children's Information Project, Project Superhero!  As ever, there is much, much more.  If you are not already a member, please consider joining AMEND - it is free - so that you have immediate access to this popular resource.

Snot, Sick and Scabs

Now you can bring your children to the AMEND Annual Information Day in London on Saturday 11th May and we will keep them entertained while you can relax and listen to our expert speakers. 

The Outreach team from the Queen Mary University and Bart's and The London School of Medicine's 'Centre of the Cell' project will be coming along to perform their show, 'Snot, sick and scabs' and run a workshop, 'Test your Neurons'.

Suitable for ages 7 and up, a thoroughly entertaining time is on the cards for the kids this year, so bring them along!

As ever, there is a fascinating programme for the adults too.  Visit our webpage to find out more!

Pharmaceutical company Exelixis recently received approval for Cometriqtm from the US Food and Drug Administration (FDA).  Cometriqtm (cabozantinib) is a prescription medicine used to treat people with medullary thyroid cancer that has spread to other parts of the body.  Cometriqtm (cabozantinib) will be available in the near future and interested patients are advised to speak to their endocrine/oncology specialists about whether this drug is suitable for them, as well as to discuss the possible side effects.

Further information for both prescribing physicians and patients can be found on the following website:

Our grateful thanks to Dr Barry Nelkin, Professor of Oncology at Johns Hopkins University Medical School, for allowing AMEND to publish his detailed update on the work of the researchers supported by the American Cancer Society's MEN2 Consortium.  The Consortium is a group of researchers working on improving the therapy of MTC, and, in a growing number of instances, collaborating with each other to facilitate the research. It was started about two years ago, with a very generous grant from Mrs. Janet Mordecai.  Read all about the current research programmes here.

The Maniac Endocrine Nomads' 120km Sahara trek has broken AMEND fundraising records.

The current fundraising total for this single event stands at a whopping £14,056.75 (US$22,300) and means that AMEND's Research Account is looking good!

Thank you Maniacs!

Read all about the trek and the Maniacs here.