Association for Multiple Endocrine Neoplasia Disorders

Patient information

Folder Information for families

  1. Starting a Family: Your Choices
  2. Talking to Children & Young People About MEN
  3. Employment and Returning to Work
  4. Choosing Your Medical Team
  5. Informed Patient Toolkit (Rarer Cancer Foundation)
  6. I've Got Nothing to Lose by Trying it (Sense about Science)


pdf Choosing Your Medical Team (UK) Popular

By 2961 downloads

Download (pdf, 3.35 MB)

AMEND-MDT-Guidelines-FINAL UK.pdf

Choosing Your Medical Team (UK)

People with chronic rare disorders need to be seen by centres of experience with a well-organised multidisciplinary team (MDT).  This guide explains about MDTs and suggests questions to ask to help ensure you receive the best care possible.  (A version for the US will be available shortly). 

"Very informative and easy to understand.  A must for patients and their carers." [carer]

pdf Employment and Returning to Work Popular

By 720 downloads

Download (pdf, 1.07 MB)


Employment and Returning to Work

Produced in 2017, this booklet from AMEND explores the issues surrounding employment that may be experienced by someone with MEN (or other genetic conditions).  It provides sources of further information on benefits and other topics.

pdf I've Got Nothing to Lose By Trying It Popular

By 1336 downloads

Download (pdf, 281 KB)


I've Got Nothing to Lose By Trying It

This guide shares things people can do – from getting involved in clinical trials to finding good evidence based information – and explains the questions people can ask about evidence to help tell the beneficial from the bogus and hold these claims at bay.  September 2013.  From Sense About Science.

pdf Informed Patient Toolkit Popular

By 2331 downloads

Download (pdf, 2.62 MB)

RCF Informed Patient Toolkit_pdf.pdf

Informed Patient Toolkit

Produced by the Rarer Cancers Foundation for UK patients.   Launched in June 2013

pdf Starting a Family: Your Options Popular

By Tagged in IVF, MEN1, MEN2, MEN3, PGD 2018 downloads

Download (pdf, 2.25 MB)


Starting a Family: Your Options

Deciding to start a family can be an exciting time.  It is no different if you have a genetic condition, but there are more issues to think about and this can feel daunting. This book aims to provide an  introduction to the different conception options available, and some of the practical, physical and emotional aspects of each of these. It provides details of sources of additional information, support and advice to help you explore your choices further, and to look after your emotional well-being.  

Copyright AMEND 2017.  

This publication was made possible thanks to a grant from the Society for Endocrinology.

pdf Talking to Children & Young People about MEN Popular

By 3481 downloads

Download (pdf, 855 KB)

Talking to Children UPDATE 2016_FINAL.pdf

Talking to Children & Young People about MEN

Leaflet to assist adults with talking to children and teenagers about MEN.

Adapted from the original with kind help and permission of the authors, Professor Alison Metcalfe and Gill Plumridge.