Association for Multiple Endocrine Neoplasia Disorders

Saturday 9th May, 2015
Thackray Medical Museum, Leeds, N Yorkshire

Supported by a Grant From Novartis Pharmaceuticals UK Limited

"Confidence boosting, superbly organised and great to meet others with similar problems" (patient)

“I was really impressed with the professionalism of the whole event from the website to all the on-site detail and consideration for the attendees and their families.” (medical speaker)

With a creche and activities laid on for the kids, adults were able to really relax and learn about MEN, as well as socialise as usual.  Videos and presentations from the day will be uploaded here shortly.

A huge thanks go to all our wonderful speakers and moderators for giving up their Saturdays for us all.  It was also fabulous to meet a large number of new faces and we hope we'll be seeing everyone again in the near future!

We kicked off the day with Dr Steve Ball, Consultant Endocrinologist from the Royal Victoria Infirmary in Newcastle who provided a fascinating as well as entertaining overview of MEN2/3 and answered many questions from the exclusively MEN2/3 audience.  At the same time, Dr Steve Orme, Consultant Endocrinologist from St James's Hospital in Leeds, did the same for the MEN1 audience, with the addition of a personal patient experience from AMEND Trustee and MEN1 patient, Emily Fazal, about treatment for liver metastases of pancreatic neuroendocrine tumours (pNETs).

The teenagers were kept busy in a session moderated by counsellor, Steve Hartley, who posed the question; 'What do I tell my friends?'.  Their discussions were illustrated by artist, Claire Stringer, and will certainly be useful in informing future work in this area.



After a sociable lunch-break, AMEND Counsellor, Kym Winter, gave a superb presentation on coping strategies for MEN patients, which resulted in quite a large number of patients attending her follow-up Mindfulness experience session.  Reports suggest that this was the most relaxed room in the museum!

Recipients of AMEND's 2013 and 2014 Research Awards, Kate Lines (Oxford) and Martina Owens (Exeter) updated the room with their research projects into MEN1.  Everyone was interested and comforted to know that research does go on into these rare conditions.  You can read more about these by clicking here.

As usual, the latter part of the afternoon was given over to our Ask the Expert Panel session, for which we were joined also by surgeons, Mr Barney Harrison (Sheffield), and Mr Mark Lansdown (Leeds).  Answers to the wide range of questions from the floor were given a real multi-disciplinary team (MDT) approach; an process which, in itself, is fascinating to hear.

Our venue at The Thackray Medical Museum in Leeds provided a wonderful DNA-making activity which was very popular with all ages - probably because their DNA was made with sweeties!

Into the evening, and a good number of attendees also joined us for a very convivial dinner.  There were definitely a few sore heads the next morning!

 

Presentations and Slides from APID2015 (or click here to view on YouTube/Full Screen)

Grateful thanks to Andy Smith (FirstSight Communications) for filming services

Basics of MEN1 (Dr Steve Orme)

{module Basics of MEN1 - Dr Steve Orme|none}

Basics of MEN2a and MEN2b (Dr Steve Ball)

{module Basics of MEN2a and MEN2b - Dr Steve Ball}

Pancreatic NETs in MEN1 (Dr Steve Orme)

{module Pancreatic NETs in MEN1 - Dr Steve Orme}

MTC Therapies in MEN2a/b (Dr Steve Ball)

{module MEN2a and MEN2b metastatic MTC therapies - Dr Steve Ball}

MEN1 Patient Experience of Liver Surgery (Emily Fazal)

{module Liver Surgery in MEN1 - Emily's patient experience}

Coping Strategies for MEN patients (Kym Winter)

{module Coping Strategies for MEN Patients - Kym Winter}

2013 AMEND Research Fund Award Winner (Kate Lines)

{module 2013 AMEND Research Fund Award Winner - Kate Lines}

2014 AMEND Research Fund Award Winner (Martina Owens)

{module 2014 AMEND Research Fund Award Winner - Martina Owens}

We are now looking forward to continuing to build upon this event's success with our 2016 Annual Patient Information Day, which will be held in London on Saturday 7th May.

If money troubles might prevent you from booking to attend our next UK event, please let us know as AMEND might be able to help you with your travel expenses.  Please contact us in confidence for a chat.