About AMEND

We are here to break the isolation so often felt by those with these rare diseases, and we would be delighted to welcome you into our ‘family’. The aim of our website is to direct you as quickly as possible to our support services and to information you can trust on multiple endocrine neoplasia (MEN) syndromes types 1, 2, and 3, medullary thyroid cancer (MTC), and Phaeochromocytoma and Paraganglioma (PPGL) syndromes.

A short history

The Association for Multiple Endocrine Neoplasia Disorders (AMEND) is a patient group set up in 2002 to support and inform anyone affected by or interested in multiple endocrine neoplasia disorders and their associated endocrine tumours. AMEND is run by patients, for patients, and became a UK registered charity (no. 1099796) in 2003, converting to a registered Charitable Incorporated Organisation (no. 1153890) from January 1st, 2014. AMEND reports to and is regulated by the UK Charity Commission.

Back in 2002, MEN1 sufferers and co-founders, Liz Dent and her daughter Emily Fazal set up AMEND as they were concerned that, having been recently 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.