Association for Multiple Endocrine Neoplasia Disorders

A fully updated 3rd edition of AMEND's popular Patient Information Book on Multiple Endocrine Neoplasia Type 1 (MEN1) for UK patients is now available to download for FREE from this website.  This follows hot on the heels of the recent launch of the 1st edition of our American adaptation of this book, which can be found using the same link.

No MEN1 patient or family member should be without this incredibly useful easy-to-read reference tool which now contains additional information on signs and symptoms of hypercalcaemia (high calcium) caused by parathyroid hyperplasia as well as hypocalcaemia (low calcium) after parathyroidectomy.  We recommend that these essential books are also given to family doctors / GPs for their records.

All AMEND's patient information books are provided FREE to together with an MEN Passport to all patients who register on our website.

Huge thanks as always to our wonderful Medical Advisors for their help in updating this book.

 


We are pleased to announce that the winner of the 2013 AMEND Research Fund Award is Kate Lines, BSc (Hons) PhD from Oxford University for her proposed project, Occurrence of microRNAs in the plasma of MEN1 patients and their feasibility as biomarkers'.

Congratulations to Kate (pictured) who begins her project in September 2013 and who receives £9,994.

To read more about Kate's project, please follow this link.

To read more about AMEND's annual Research Fund Award and previous winners, please follow this link.

Research is currently underway in the UK to investigate how to support families affected or at risk from inherited genetic conditions like MEN or SDH.  This is a perfect complement to AMEND’s current work to produce information resources for children, ‘Project Superhero!’.

 

Kings College London, Manchester University and Cardiff University are working together with clinicians to develop interventions that will support families to communicate more effectively with their children (<18 years) about the genetic condition affecting the family and its risks.

 

They want to work together with parents, children and young people and would love to hear from you if you would like to work with them in developing family focused research and interventions to improve care and inform service delivery. There are lots of different ways to get involved from taking part in different aspects of the research to informing its development.

 

If you would like more information about the research or the different ways that you may contribute to research activities please contact Emma Rowland who is a member of the research team:  Telephone: 0207 848 3056. Email: This email address is being protected from spambots. You need JavaScript enabled to view it.

We are delighted to be able to report that, as of Monday June 24th, the AMEND Counselling Service has been relaunched with new Counsellor, Kym Winter, at the helm.  Kym has over 15 years of experience in this field.  She takes over from previous long-standing Counsellor, Karen Langrick, who had to step down from the role earlier this year for personal reasons.

The AMEND Counselling Service is available for fully registered patient members of AMEND and offers FREE and confidential telephone sessions together with assistance to access face-to-face counselling in your local area if appropriate.  Pre-bookable face-to-face counselling with Kym will also be available at occasional AMEND events or Annual Patient Information Days.

AMEND patient members who are outside of the UK should email Kym and arrange sessions in advance.  Please bear time differences in mind.

Read more about the service and about Kym here.

 

Saturday 11th May saw another hugely successful AMEND Patient Information Day.  At this, AMEND's 11th such annual event, a full multidisciplinary team (MDT) was in attendance throughout the day, providing fascinating talks on different aspects of MEN, and forming an expert panel for our hour-long afternoon Ask the MDT session.

Speakers included Professor Karim Meeran (London) and Dr Constantine Stratakis (NICHD, USA).  Films and slides from all the main presentations will be available to view soon on the website.

"Brilliant day.  Lots of information.  Wonderful speakers"

"Enjoyed meeting other people/families with similar problems"

Feedback from the day has been excellent, with several families appreciative of the opportunity to be able to bring their children to take part in kids' activities so that they could attend themselves.

Huge thanks goes to all our wonderful speakers, organising volunteers and attendees, who made the day so successful.

For more information about the 2013 meeting, click here.

Plans are already well underway for the 12th Information Day which will be held at Bristol Zoo on 10th May 2014.  Read about these plans here.

 

Registered members of AMEND may now log in to access the latest newsletter here on this website.

This quarter we say a very sad goodbye to the lovely Margaret Francis whom many of you knew.

There is news of our 2013 Research Award, other opportunities for getting involved in research, and a full update on the 2013 Annual Patient Information Day.

And as usual, there is much, much more

We are delighted to report that UK Charity, Macmillan Cancer Support has awarded AMEND a one year grant to provide support and information services to patients with adrenocortical cancer (ACC) in the UK.

This project, working in collaboration with the UK's NET Patient Foundation, will be filling a very real gap for such services currently.  A medical advisory team is already in place and helping to update and produce existing and new information resources.

Further plans include a new ACC specific website and a Patient Information Day along the same lines as those we currently hold at AMEND and NET Patient Foundation for our own patient communities.

For more information on our plans and on ACC itself, see our ACC webpage.