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.

Our culture and values

AMEND is a small, friendly organisation that believes in providing education, information, and friendship to everyone, equally.

Equality, diversity and inclusion policy

AMEND believes in the principles of social justice, acknowledges that discrimination affects people in complex ways and is committed to challenge all forms of inequality. To this end, AMEND will aim to ensure that:

- All individuals who come into contact with AMEND are treated fairly, with dignity and respect regardless of their age, marital status, disability, race, faith, gender, language, social/ economic background or sexual orientation and any other inappropriate distinction;

- it affords all individuals and volunteers the opportunity to fulfil their potential;

- it promotes an inclusive and supportive environment for all individuals and volunteers;

- it recognises the varied contributions to the achievement of AMEND’s aims made by individuals from diverse backgrounds and with a wide range of experiences.

When carrying out its activities the charity will have due regard to:

- promoting equality of opportunity, across all the activities of the charity

- promoting good relations between people of diverse backgrounds

- eliminating unlawful discrimination