We are here to break the isolation so often felt by those with these rare diseases, and we would be delighted to welcome you into our 'family'.
The aim of our website is to direct you as quickly as possible to our support services and to information you can trust on multiple endocrine neoplasia (MEN) types 1, 2, and 3, medullary thyroid cancer (MTC), familial medullary thyroid cancer (FMTC), adrenal gland tumours (phaeochromocytomas), parathyroid hyperplasia, paragangliomas, familial isolated pituitary adenoma (FIPA) and succinate dehydrogenase (SDH) disorders.
There was something for all the family again this year at AMEND's Annual Patient Information Day on Saturday 9th May in Leeds.
Around 70 attendees enjoyed social time and a range of fascinating talks, not to mention a great Mindfulness experience session.
You can now view all the main presentations together with their integral slides on our website.
In October 2014 AMEND made a submission on behalf of patients to the All Wales Therapeutics & Toxicology Centre in support of the appraisal for use of cabozantinib (Cometriq™) for metastatic medullary thyroid cancer (MTC).
We are pleased to report that the AWTTC confirmed on Tuesday 10th February, that the appraisal received Ministerial approval at the end of January 2015, and that cabozantinib will be available for use in patients with metastatic MTC by the end of April 2015.
Appraisal Lead, Dr Claire Davis expressed her thanks to AMEND for the submission: "I would like to thank you directly for your help with obtaining patient/carer views for the cabozantinib (Cometriq®) appraisal. The information provided really helped to inform members of the appraisal groups."