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. AMEND is affiliated with AMEND USA, a registered US 501c3 non-profit public charity (EIN 90-0885351) which reports to the IRS.
Back in 2002, MEN1 sufferers and co-founders, Liz Dent and her daughter Emily Fazal 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 patient-aimed information books on MEN back in 2005 (revised and updated in 2009/10). 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 together with the help of a committed band of patient, family and healthcare professional volunteers. Also in 2008, membership of AMEND was made free to all. 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.
If you are interested in starting a patient group in your country, AMEND has a programme to help you.
Aims of AMEND
To improve the well- being of all persons affected by MEN and endocrine tumours 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.