2018 marks the 15th year of AMEND’s work to provide information resources and support services to families affected by multiple endocrine neoplasia and associated tumours and disorders. Therefore there is plenty going on this year, such a few highlights:
· AMEND members will be taking part in 2 major surveys. The European Multiple Endocrine Neoplasia Alliance (EMENA), of which AMEND is a member, will be asking patients with MEN to tell us about the state of care for MEN within their EEA countries. The other will be a survey done in collaboration with the NET Patient Foundation as part of our Project Research Road Trip. The survey aims to get a better idea of the thoughts of patients with endocrine and neuroendocrine tumours in the UK with regard to current and future research.
· AMEND was delighted to work with Dutch patient group, Belangengroep MEN, to develop Dutch translations of our kids’ cartoons on MEN1 and MEN2. They can be viewed here. If any other group is interested in adapting and translating the cartoons for its patient communities, please feel free to get in touch with Jo Grey directly to discuss Licence fee and editing costs.
· AMEND is launching a brand new website this month at www.amend.org.uk. The new site better reflects AMEND’s strong branding, is much more inviting and most importantly, more engaging for younger people. Already launched is AMEND’s latest patient information resource; ‘Working with your Medical Team’. This new title explains the composition and roles of the MDT and Centres of Expertise, and gives helpful tips on making the most of hospital appointments and communicating with medical professionals. It is free to download from the website.