Association for Multiple Endocrine Neoplasia Disorders

People with chronic rare disorders are best cared for in an experienced multidisciplinary team (MDT) hospital setting - fact.  But how do you know that you are?  Today, which rather appropriately is Rare Disease Day, AMEND launches its latest publication: How to Choose Your Medical Team.

Developed with AMEND's Medical Advisory Team, this guide gives patients the full low-down on MDTs and information on how to ask the right questions to ensure that they receive the best care possible.

As always, our resources are free: you can download the guide from this website, or contact the UK office for your free hardcopy.  A version of this guide for the USA will follow shortly.

A carer for an MEN2b patient commented that the guide is, 'very informative and easy to understand...a must for patients and their carers.'

 

Nicole Sparkes, President of the Merton College Junior Common Room (JCR) and Committee Member for Charities, contacted AMEND yesterday to provide an update on the year-long fundraising activities of JCR.

After a busy year of auctions, charity meals, custard pie fights and sales of an eyebrow-raising, blush-inducing 2013 naked calendar, the students raised just under £2500 for each of 4 charities, including AMEND.

The students thoroughly enjoyed their 'liberating experience', and had insisted that, in the interests of fairness, the Merton JCR Mascot, 'Monkey' (pictured above), appear in each of the photos without his customary tshirt.  Jezah Khamisa, a first-year Historian, claimed: “The calendar clearly defies the idea that fun goes to die at Merton.”

We would like to thank all the students who took part in the fundraising activities for their fantastic efforts in raising this money (especially for baring all in the cold early morning photo-shoots!).  The funds will be put towards expanding the AMEND Young Investigator Awards to a further 3 specialist medical societies relevant to the diseases we support in addition to the one already awarded at the British Endocrine Society annual meeting.  Who knows, there may be a Merton College medical student who wins one in the future!

Special thanks also go to AMEND member Callum Hackett, who put AMEND forward as one of the JCR’s nominated charities for 2012.

We wish them all well with their continued studies and fundraising adventures!

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!

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.

 

 

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 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.