Association for Multiple Endocrine Neoplasia Disorders

 
If you or a member of your family has been affected by medullary thyroid cancer, this concerns you.  The National Institute for Health and Care Excellence (NICE) recently reviewed the use of the tyrosine kinase inhibitors, cabozantinib and vandetanib for treating MTC that has progressed and cannot be cured by surgery.  Their report was published today and shows their intention to completely withdraw access to these drugs by the NHS.  Whilst these drugs cannot cure someone of MTC, they have been shown in studies to help slow down disease progression.  They can also be more effective if the person and/or the tumour has a RET mutation (as in MEN2), but NICE decided not to take this into consideration since testing tumours is not funded by the NHS.  In addition, they are recommending against these drugs because patients with metastatic MTC patients live too long!  Both drugs can currently be access through the Cancer Drugs Fund (CDF).  NICE however, concluded at a recent meeting, that both drugs should be withdrawn from the CDF and that they should not be made available at al for treatment of MTC on the NHS.  This leaves people with MTC with just one chance of cure - surgery.  Of course, this rarely works if someone is diagnosed with disease that has already spread.  
 
We think that NICE is being short-sighted in applying the same decision making strategies to such a rare cancer as is used for more common cancers.  We now have one last chance to push NICE to reconsider this drastic action and we need your help!  Tell them what you think.  If you or someone you know has used either drug and it made a difference, tell them.  If you would like the choice of access to these drugs in the future, tell them.  If you believe that they should have taken RET mutation patients into account, tell them.  If you think that excluding these drugs from the CDF because patients live too long is unfair, tell them.  If you think rare cancers like MTC should be given special consideration, tell them.  If you’re concerned that there are no other treatments available for metastatic MTC, tell them!
 
We need as many people as possible to comment on the NICE consultation report and tell them what you think.  The deadline for doing this is September 14th meaning that we have just 2 weeks to mount a decisive response!
 
 
Thank you and good luck!
 
NB: Access for those people already being treated with either cabozantinib or vandetanib via the CDF will continue unaffected.

AMEND is pleased to bring you our latest publication: 'Starting a Family: Your Choices'.  Funded by a grant from the Society for Endocrinology, this publication aims to provide an introduction to the different conception options available to someone with MEN, and some of the practical, physical and emotional aspects of each of these. We also signpost you to sources of additional information, support and advice.  Download for free or order a free hard copy if you are a registered patient member of AMEND.

'An excellent resource'

'Looks and reads as a very comprehensive addition to patient support'

Click here to visit the webpage and download the book for free

Central Manchester 10:00-17:00

Education and friendship

Click here to book your place

 

On Saturday 6th May in Central Manchester, we held our 2017 Annual Patient Information Day.

All those affected by multiple endocrine neoplasia (MEN), succinate dehydrogenase syndromes (SDHx) and adrenocortical cancer (ACC) were invited to this popular day-long event to listen to some fascinating talks and participate in some useful workshops.  Sessions included those on Transition, Understanding Research Articles, Using Social Media for Support, as well as patient experiences.

The filmed presentations are now available to view on our YouTube Channel (AMEND3). Click here to view the playlist.

We are already taking bookings for our 2018 Information Day on 12th May in London. Click here for more information and to book!

NET Cancer Day will be upon us once again on 10th November.

This year's theme is 'Let's Talk About NETs' and there are plenty of ways to get involved to help raise awareness of the neuroendocrine tumours (NETs) that are involved in multiple endocrine neoplasia (MEN).

Click here to visit our webpage and find out more!

Don't forget to follow us on Facebook and Twitter on the day

We are delighted to announce that Professor Maralyn Druce has joined AMEND's Medical Advisory Team.

Professor Druce, a consultant endocrinologist from St Bartholomew's Hospital in London has special expertise in medical education and we know that she will be a great addition to our wonderful team.

Click here to learn more about Professor Druce.

 

This year, for the first time, AMEND has signed up to The Big Give Christmas Challenge.

We are aiming to raise a total of at least £7,000 to fund a project to develop digital resources for young people (aged 16-25) about the issues they face living with MEN.

The money will be raised by a combination of Pledges which will match-fund any general donations received during a short 72-hour window from midday 29th November to 12pm on 2nd December.  If we're really lucky, The Big Give organisation's Champions may additionally match donations, meaning that your donation could be doubled or even quadrupled!

To learn more about becoming a Pledger or Donor for our campaign, and for more details about the project itself, please visit our webpage.