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.
- Who we are
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 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.
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 Regional 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)
- 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.
- How we are governed
As a UK registered charity (non-profit organisation), AMEND is regulated by the UK government’s Charity Commission and produces annual reports and accounts. It does not receive government funding.
AMEND USA is affiliated with AMEND (UK) but is a US tax exempt 501(c)(3) non-profit public charity itself (IRS number 90-0885351). If you are interested in being involved with this organisation, please do contact the main representative directly.
Board of Trustees
AMEND has a Board of Trustees (Directors) which includes patients, healthcare professionals and other interested parties with specific qualifications. It is the Board’s responsibility to set the organisation’s strategy and to ensure that the charity operates in compliance with the laws of the United Kingdom.
Interested in becoming a Trustee? Just contact us for a chat!
- Click on the individual links below to find out how our Trustees enjoy and value their volunteer roles
- For more information on the roles and responsibilities of Trustees, please visit the National Council for Voluntary Organisations’ website
- Induction and Training is provided!
Click here to see our current Trustee Board, the AMEND UK Medical Advisory Team and organisations that AMEND is a proud member of.
- Who our sponsors are
We are very grateful for all the wonderful support that AMEND has received over the years in either monetary or in-kind donations and sponsorship as well as individual fundraising.
Click here to see our current and past sponsors.
- Annual Reports & Accounts
As a UK registered Charitable Incorporated Organisation (No. 1153890), AMEND must submit its report and accounts to the UK Charity Commission annually. AMEND was a registered unincorporated charity (no. 1099796) until it became a CIO from 1st January 2014.
You can view both our CIO and our unincorporated charity summaries and Annual Reports & Accounts on the Charity Commission Website
- Coronavirus (COVID-19) Information
Make a donation
AMEND has a variety of ways to donate to show your appreciation for our work.
Become an AMEND member
Membership is free so come and join our family.
AMEND uses a number of social media channels to provide information and support.
There’s always something going on at AMEND. Check out the latest news
Filmed main programme event sessions and other information.
The very rare occurrence of RLN transection is heart-sinking for all thyroid surgeons. In this situation, what wou… twitter.com/i/web/status/1… Retweeted by AMEND
When might thyroid surgery be offered? What questions do I need to ask? What are the likely consequences of thyroid… twitter.com/i/web/status/1… Retweeted by AMEND
Reading preliminary results of our survey - Impact of COVID19 on mental health in MEN & PPGL syndromes - humbling 😢 pic.twitter.com/l0qx5uMRLP
pic.twitter.com/1anQyNJsNQ Retweeted by AMEND
Can you help us? Please complete our survey: Survey of Impact of COVID19 on Emotional Wellbeing in People with… twitter.com/i/web/status/1…
Can you help us? Please can you complete our survey: Survey of Impact of COVID19 on Emotional Wellbeing in People w… twitter.com/i/web/status/1…