Association for Multiple Endocrine Neoplasia Disorders (AMEND)

Who we are

AMEND is a UK-registered charity (CIO no.1153890, formerly 10997996 from 2003-2013) that provides vital free information resources and support services to anyone affected by rare cancers, functional tumours, and genetic syndromes of the endocrine (hormone) system.  These include the rare genetic diseases multiple endocrine neoplasia (MEN) and phaeochromocytoma and paraganglioma (PPGL) syndromes as well as adrenocortical and medullary thyroid cancers.  AMEND provides support to affected families via phone, email, social media groups, and our own professional counselling service, along with peer support meetings facilitated by trained volunteers.  Our young adults benefit from their own WhatsApp Group moderated by trained volunteers.  We produce extensive patient information resources for adults, young people, and children with strong medical advisory team assistance. Resources include our website, patient literature and an annual patient information event.  AMEND represents its members by providing the patient voice in a variety of arenas including in national medicine reviews with NICE and the SMC, and on a variety of major research projects.  We also value the input of our wider membership in research and have organised Community Advisory Groups to give prompt, wider input into both large and small studies.  We greatly value all our volunteers who are involved in all areas of AMEND’s work from our Trustee Board to our wonderful fundraisers without whom we couldn’t do what we do.  Being a rare disease patient is expensive, so we have always maintained free membership, resources, and services to everyone everywhere via the charity’s website.