ACC Support UK is a joint venture between two well-respected patient organisations. Through working together, AMEND and the NET Patient Foundation provide information resources and support services to ACC patients and their families and carers in the UK. Both organisations provide free psychological Counselling services and moderate a private Facebook Group for those affected by ACC which is helpful for peer support. The NET Patient Foundation provides a specialist nurse helpline for patients and AMEND provides opportunities for ACC patients to meet others at a variety of free events. Both organisations work together to provide up-to-date information resources to help patients to navigate through their ACC journey.
The Association for Multiple Endocrine Neoplasia Disorders (AMEND) is a patient group set up in 2002 to support and inform anyone affected by or interested in multiple endocrine neoplasia disorders and their associated endocrine tumours. AMEND is run by patients, for patients, and became a UK registered charity (no. 1099796) in 2003, converting to a registered Charitable Incorporated Organisation (no. 1153890) from January 1st, 2014. AMEND reports to and is regulated by the UK Charity Commission.
The aims of AMEND are to improve the well- being of all persons affected by MEN and endocrine tumours by:
- Providing support to patients and their families and friends;
- Providing information about MEN and other relevant issues relating to genetic disorders,
- Promoting a wider knowledge of MEN among the medical profession to assist in early and accurate diagnosis, and;
- Assisting in future MEN research
NET Patient Foundation (NPF) is a UK wide charity solely dedicated to providing support and information to those affected by Neuroendocrine Cancer. We also act as advocates, working with healthcare professionals and health policy makers, to promote access to best care and treatments, increase awareness, encourage and support clinical research and ultimately improve patient experience and outcomes.
From diagnosis, through treatment(s) and beyond, our team and services are here to offer expert-endorsed guidance, support, education and information to anyone affected by neuroendocrine cancer.
Over the phone, online or face-to-face – we are here, every step of the way.
Our vision is of a world in which people know how to recognise, diagnose, treat, care for, and ultimately, cure patients with Neuroendocrine Cancer.
Our purpose is to support and inform patients and families from diagnosis, enabling access to the best care and treatment, whilst stimulating Neuroendocrine Cancer research, increasing national awareness and influencing improvements in outcomes.
- Equality of care for all Neuroendocrine Cancer patients in the UK
- Excellence in support, care, treatment and research
- Fair allocation of national resources and inclusion in national
policies and strategies for all cancer types
- Collaborative working and building an accessible, approachable fraternity
- Honesty, transparency and integrity to promote confidence and trust in the charity.