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.

With the help of the AMEND medical advisory team, Jo Grey produced the first English language versions of our patient-aimed information books on MEN back in 2005.  Since then, AMEND has continued to find other innovative ways to help support and inform patients and their families and friends around the world. Amongst these innovations is the MEN Passport; a portable record folder for keeping track of the complicated monitoring and treatment regimes involved in living with MEN.

In 2008 Jo Grey became CEO and Chair of the Trustee Board and continues to run AMEND today as CEO ably assisted by Administrator, Helen Blakebrough and a committed band of patient, family and healthcare professional volunteers.

Jo Grey, AMEND CEO

Helen Blakebrough, Administrator

In 2008, membership of AMEND was made free to all, and in 2009, AMEND’s free counselling service for volunteers and members was launched.

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 and endocrine tumour patients. The charity believes strongly in investing in its growing band of volunteers and provides appropriate training wherever possible.  Nowhere is this better reflected than in our Peer Support Volunteers project which was launched in 2018.

AMEND also runs two other groups:

• ACC Support UK (for those affected by adrenocortical cancer – in collaboration with Neuroendocrine Cancer UK)
• Phaeo Para Support UK (for those affected by inherited phaeochromocytoma and paraganglioma syndromes)