Association for Multiple Endocrine Neoplasia Disorders

Saturday 14th October 2017

Hastings Europa Hotel, Great Victoria Street, Belfast

 

Come and enjoy this FREE, small and informal AMEND Roadshow meeting.  

You will have the chance to meet other patients, meet members of the AMEND team, and quiz our visiting medical expert (tbc)

 

Registration is essential - Click here to book your place(s)

 

"AMEND Roadshows are a life-saver. They provide fantastic and clear information and radically reduce feelings of panic and isolation that goes with a rare disease" [patient]

 

 

Saturday 12th May, 2018

National Council for Voluntary Organisations

All Saints Street, London N1

10:00am to 4:30pm

For all those affected by Multiple Endocrine Neoplasia, SDH disorders and Adrenocortical Cancer.

FREE day of informative talks and plenty of networking and social time to get to know other patients.

Programme to be decided in early 2018

 

Click here to book your places now!

 

If you're interested in speaking about your experience as a patient to a friendly room of other patients, please do contact Jo in the office.

If you are a medical specialist or researcher who would be interested in coming along and speaking on a relevant topic, please also contact Jo in the office.

 

"Brilliant day and so well organised. Thrilled to have been able to attend. Topics so relevant and make you feel in control of your condition. Thank you."

 

We know you will gain a great deal by becoming a member of AMEND, so welcome!

  • Registering as a member is FREE as are all our resources.
  • Members in the UK and Eire are sent their FREE Welcome Pack upon registration, including, where appropriate, a hard copy of the relevant patient information book and an MEN Passport.
  • A charge of £15 applies to members outside of the UK and Eire who wish to receive the Pack. You will receive instructions on how to pay the charge via email.

Please rest assured that AMEND takes patient privacy extremely seriously and conforms with data protection laws. Your details are never shared with anyone without your express permission.

Where do we get our medical information from?

AMEND is very much guided on the production of our information resources by our Medical Advisory Team who are all experts in their fields.

Information about the medical disorders is based upon the following:

  • Thakker, RV, Newey, PJ et al, 'Clinical practice guidelines for multiple endocrine neoplasia type 1 (MEN1)', J Clin Endocrinol Metab. 2012 Sep;97(9):2990-3001
  • Brandi, ML, Gagel, R et al, 'Guidelines for diagnosis and therapy of MEN type 1 and type 2', J Clin Endocrinol Metab. 2001 Dec;86(12):5658-71
  • Perros, P et al, 'British Thyroid Association Guidelines for the management of thyroid cancer', John Wiley & Sons Ltd Clinical Endocrinology (2014), 81 (Suppl. 1), 1–122
  • Martucci, VL and Pacak, K, 'Pheochromocytoma and paraganglioma: diagnosis, genetics, management and treatment', Curr Probl Cancer 38 (2014), 7-41 Elsevier
  • Fassnacht, M, Arlt, W et al, 'Management of adrenal incidentalomas: European Society of Endocrinology Clinical Practice Guidelines in collaboration with the European Network for the Study of Adrenal Tumors', European Journal of Endocrinology 2016
  • Chahal, HS, Korbonits, M, 'Familial Isolated Pituitary Adenomas', US Endocrinology Touch Briefings, 2009
  • Relevant national and international consensus guidelines as they become available

What is our editorial process?

AMEND's medical information is written by an expert patient in order that it is easy-to-understand for a lay audience, and are amended and then approved by the AMEND Medical Advisory Team before publication.

In some instances, one or more specialist authors are asked to help produce resources.  These resources also require authorisation by the AMEND Medical Advisory Team before publication.

When is information updated?

Information resources may be updated when a relevant new national or international consensus guideline is published.

Webpages are reviewed on an annual basis to check for accuracy and necessary updates.

Printed resources are generally updated and reprinted every 3 years, although reprinting may vary according to funding constraints.

 

Whilst we try to select only the best sites with whom to link, AMEND cannot be held responsible for the quality of information on external sites.