Association for Multiple Endocrine Neoplasia Disorders

Holiday Inn, Manchester City Centre
Saturday 6th May, 2017

 

Our programme for the 2017 AMEND Annual Patient Information Day was expanded for the first time to include two other endocrine diseases, SDHx disorders (phaeochromocytoma and paraganglioma syndromes) and adrenocortical cancer (ACC), who joined the MEN family for a day of education and friendship.  As usual, a creche was available to allow parents of young children to relax, learn and network with others without having to worry about arranging childcare at home.

Attendees took advantage of an excellent overview session from Dr Steve Ball (Manchester) of MEN and SDHx disorders followed by individual disease sessions including some patient experience talks.  At the same time, Dr Vasileios Chortis (Birmingham) presented an overview and update on adrenocortical cancer.  Consultant HPB and pancreatic surgeon, Mr Derek O'Reilly (Manchester), gave a well-received presentation on the Whipple's procedure to the MEN1 group, while Dr Scott Akker (London) gave an equally well-received presentation on SDHx disorders.  Our MEN3 group were visited by Elizabeth Noble from the charity Changing Faces to discuss issues surrounding visible differences in the condition.  In the afternoon, attendees had a choice of repeated sessions, including transition for teenagers and for parents, breaking difficult news, using social media for support, participating in research and interpreting research articles.

We were delighted that a number of attendees joined the team for the evening meal at Brown's restaurant where much fun was had by all.

Thank you to all who came, our sponsors, our staff, speakers and volunteers.  We're looking forward to London 2018 already!  Hope to see you there!

Some of the feedback received:

"Thank you very much for the day!  It was stimulating and motivating.  It made me feel part of a ‘community’ of other people who are in similar situations"

"Always good to be here and I learn something new every time.  Some lovely personal exchanges which could never happen otherwise.  Many thanks."

"Amazing day!  Enlightening, informative and morale-boosting!"

Presentation Films and Slides:

Some of our sessions were filmed and are available to view on our YouTube channel (AMEND3). Click here to go to the playlist.

London 2018:

You can already book your places for the AMEND Patient Information Day 2018, which will be held in central London on Saturday May 12. Click here to learn more and to access the booking link

 

 

(This event was possible thanks to a grant from Novartis Pharmaceuticals UK Ltd)