The Association for Multiple Endocrine Neoplasia Disorders ( AMEND) is an international patient group supporting and informing anyone affected by or interested in multiple endocrine neoplasia disorders and their associated sporadic endocrine growths.  AMEND is a UK registered charity (no. 1099796) and reports to and is regulated by the UK Charity Commission.

AMEND was set up in 2002 by MEN1 sufferer, Liz Dent (pictured) and her daughter Emily Fazal.  At that time, Liz and Emily were concerned that, being diagnosed with a rare condition, there was little information to be found regarding best treatment, and even fewer fellow patients with whom to be in contact to share experiences – a process that so many people find helpful.

With the help of its medical advisory team, AMEND produced the first patient-aimed information books on MEN back in 2005 (revised and updated in 2009/10), and have continued to find other innovative ways to help support and inform patients and their families and friends.  In 2009 AMEND launched it's very popular MEN Passport; a portable record folder for keeping track of the complicated monitoring and treatment regimes involved in living with MEN.

AMEND works hard forging and maintaining cooperative working alliances with other patient and professional groups around the world in order to ensure the best support possible for MEN patients.  The charity believes strongly in investing in its growing band of volunteers.  As such, AMEND provides appropriate training, both inhouse and externally, particularly for our Telebuddies, who maintain regular contact with our members by phone and email.  Telebuddies attend a one-day loss and bereavement workshop run by the charity Cruse and which incorporates a listening skills module.  All our volunteers have access to one-to-one supervision (counselling) through AMEND's own qualified counsellor, a service which was also opened up to all AMEND's registered members in 2009.

In 2008 membership of AMEND was made free for all.

To improve the well- being of all persons affected by MEN by:

• Providing support to patients and their families and friends;
• Providing information about MEN and other relevant issues relating to genetic disorders,
• Promoting a wider knowledge of MEN among the medical profession to assist in early and accurate diagnosis, and;
• Assisting in future MEN research

We are always pleased to hear from you so don't hesitate to get in touch and see how we can help.