Association for Multiple Endocrine Neoplasia Disorders

Registered members may now log in to view the latest newsletter from AMEND.

This quarter sees the newsletter get a new fresh look and as usual it is packed with information.

There's an MEN1 My Story, project update news, research news, a round-up of this quarter's events and a whole lot more!

Check out our new Cookery Corner feature too.

As always, we value your feedback and contributions.  So if there's something you would like to see us include in the future, or you would like to contribute yourself, we would love to hear from you.

Not a member?  No problem!  Just register for free now, and in addition to being able to view latest newsletters, you will receive your free membership pack including our MEN Passport (where appropriate).  Join Now!

We are delighted to be able to invite patients to attend a Society for Endocrinology professional medical Symposium on Friday 6th December, in London.

Thanks to AMEND Trustee, Professor Karim Meeran and the rest of the organising committee, you are invited to attend the main professional sessions on pituitary and parathyroid issues and/or the parallel patient sessions on pituitary function testing and emergency steroid injections.  In addition, there will be a general Ask the Doctor session for you to quiz an expert on any burning questions you may have.

We do hope you can join us at this fascinating event.

To find out more and to book a place, please visit our webpage.


Everyone has a hero – a person whose support, faith and positive energy are crucial in one’s journey through life. We all need a shoulder to lean on.

Name Your NET Hero to mark Worldwide NET Cancer Awareness Day on November 10th. Send in a photo of your NET Hero, and a line or two describing why he or she is your hero. Be it your doctor, nurse, spouse, friend, partner, colleague, etc., or all of them, bring these people to the spotlight, make their names and faces recognized on a global scale! 

Many people around the world have NET (neuroendocrine) tumours or NET cancer as part of their lives, including those with MEN, SDH and associated conditions. Their stories with the disease make them heroes. Let’s bring our NET heroes from around the world together here on our Facebook page and the NET Cancer Day website. 

Here’s how to participate. Upload your photo to the NET Cancer Day Facebook page and post a comment describing your hero. NOTE: It is very important that you include #NETHero in your comment. This will ‘tag’ your photo and send it through to our special NET Hero page on the NET Cancer Day website). You can view all of the NET Heroes on the website.

As part of a European research study, Genetic Alliance UK and researchers at the University of South Wales want to understand how patients perceive the risks and benefits of medicines. The work is important to ensure that patient views are valued in the regulation of new medicines.

If you are 18 or older, and you are a patient or a carer, you can help us by completing a short online survey. The survey includes questions about your experience with medicines, your view of the risks and benefits associated with medicines, and how you think medicines should be regulated.

The survey is available in several different languages.

Click here for further information and direct links to the survey.

Would you like the opportunity to learn more about research being done into tumour growth using animal research? The use of animals in research is a fascinating and important part of medical research but it is an area that is often not well presented or understood.

To introduce patients to animal research, Genetic Alliance UK and Understanding Animal Research would like to invite those affected by MEN and association conditions to a free workshop which will explain how and why animals are used in medical research and why this is important to the development of treatments for genetic conditions.

In this one-day workshop, presentations will be given by different research scientists who are researching things including the formation of tumours and how they grow. They will discuss and answer questions related to their understanding of current research, how, why and when they use animals in their study, when it is appropriate to use alternative methods, and their feelings on the ethics of animal research.

Patients and/or carers will have the opportunity to talk with people working at the cutting edge of research into relevant condition areas, as the researchers explain their take on the conditions that they study and the different approaches used to investigate them.

The day will also include a tour of an animal research facility, showing how the animals that are used are kept and cared for. The day will offer insights into how medical research is carried out and how pieces of the puzzle are fitted together to improve understanding and treatments in the clinic.

The event will be held in central Cambridge on 29th November from 10am.

If you are a patient or carer and would like more information or are interested in attending the day, please contact Julian Walker on 020 7704 3141 or at This email address is being protected from spambots. You need JavaScript enabled to view it..


The research project “Talking to Children about inherited genetic conditions” launched on 1st September 2013. The project works collaboratively with families (parents, children and young people) with an inherited genetic condition to develop an intervention that will support families to communicate more effectively with their children (<18 years) about the genetic condition affecting their family and its risks.

We received a large number of expressions of interest from families wanting to take part in the study. As a result of the discussions about families involvement we have extended the number of focus groups to include one a group where parents haven't spoken to their children can help us to develop the intervention. This focus group will be held on 23rd November 2013.

If you would like more information about our research or to express your or your interest in taking part in the focus group above please contact the research team directly: Emma Rowland, James Clerk Maxwell Building, King’s College London, 57 Waterloo Road, London, SE1 8WA.  Telephone 0207 848 3650 Email: This email address is being protected from spambots. You need JavaScript enabled to view it.

For details on this and other ways in which to get involved in research, visit our Patient Involvement in Research webpage.

Notice of an Extraordinary Meeting of the Members of the AMEND

Saturday 5th October, 2013, from 2:00-2:30pm

Birmingham, UK


Please be hereby advised of the above meeting called by the Board of Trustees of AMEND, pursuant to the agreement in principle of the membership at the May 2013 Annual General Meeting of the charity to the change of AMEND from an Unincorporated Charity registered in England and Wales to a Charitable Incorporated Organisation (CIO) registered in England and Wales.

Registered members of AMEND are encouraged to attend to cast their votes on the proposals, or to submit a proxy voting form.

This short meeting will be followed by an Ask the Doctor Session hosted by AMEND Trustee and Consultant Endocrinologist, Professor Karim Meeran, from 2:30pm - 4:00pm

For more information visit our webpage on the potential change to CIO.

The Board of Trustees looks forwards to meeting you!