AMEND CEO, Jo Grey and AMEND Counsellor, Kym Winter, have had their invited Review for the medical journal, Endocrine-Related Cancer (ERC), accepted for publication. The Review, entitled, Prognosis and Quality of Life in Multiple Endocrine Neoplasia Type 2 (MEN2), takes a unique look at the advances made since the development of the genetic test for the RET mutation that causes MEN2 25 years ago. The authors draw on real-life patient stories and experiences to help illustrate these advances as well as the continuing challenges in the care of these complex genetic neuroendocrine tumour syndrome patients. The authors call for renewed efforts to centralise care for this patient community within expert centres, to provide routine psychological help, and to increase levels of research into the conditions.
AMEND also announced a new Alliance of patient groups dealing with the genetic NET syndromes, Multiple Endocrine Neoplasia (MEN) who are shortly to launch a survey of MEN patients throughout Europe. The European MEN Alliance (EMENA) is comprised of patient advocacy groups and medical experts in the EEA, specifically, UK, Germany, Belgium, The Netherlands and Italy. EMENA will be surveying patients to gauge the patient perception of the care they receive for their condition. This will also be followed up with additional small surveys relating to quality of life and to paediatric care.
If there are any European INCA members (or non-members) who provide support to MEN patients but who are not aware of this initiative, or if you know of any groups who would be interested in being involved, please get in contact with Jo Grey, AMEND CEO (email@example.com).