Association for Multiple Endocrine Neoplasia Disorders

Patient information

archive Patient Information Books

patient information booklets



We have published guides on all the MEN disorders as well as other conditions and aspects of the conditions.  Our aim is to help newly diagnosed patients gain a greater understanding of their condition and to provide reference tools for patients of all ages throughout their life.

Click on the category title to access the listed titles.



Folder Disease information books

  • MEN type 1 (UK)
  • MEN type 1 (USA)
  • MEN type 2a (now known as MEN2) (UK)
  • MEN type 2a (now known as MEN2) (USA)
  • MEN2b (now known as MEN3)
  • Familial Medullary Thyroid Cancer (FMTC)
  • Sporadic Medullary Thyroid Cancer (MTC)
  • Phaeochromocytomas & Paragangliomas
  • Familial Isolated Pituitary Adenoma (FIPA)
  • Adrenal Insufficiency (Society for Endocrinology)
  • Adrenocortical Cancer (ACC)


Folder Emotional Well-being Resources

  • Dealing with Diagnosis
  • Living with Uncertainty

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)

Folder Procedure information

  1. Whipple's Procedure
  2. Adrenal Surgery


Tagged in: PGD

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pdf Starting a Family: Your Options Popular

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

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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.