Supporting the

Neuroendocrine Cancer Community


Advocacy is the act of speaking on the behalf of or in support of another person, place, or thing.

It is about helping people to have their voice heard: accurately representing their interests or concerns, rather than an interpretation of those interests or concerns.

There are different ways to advocate for someone else:

Informal individual advocacy involves parents, friends or family members speaking to represent those who may not be able to speak for themselves.
Formal individual advocacy more frequently involves professionals or organisations that speak to represent someone or a group of individuals.

Systems advocacy is about influencing or changing policies, laws or rules that impact on the life of an individual or group of individuals. These efforts can be targeted at a local, regional or national level.
The focus of systems advocacy, depends on the type of issue, the individual or group affected, and who has authority to determine the outcome.

Neuroendocrine Cancer UK exists to address the needs and concerns raised by our Neuroendocrine Cancer community, to support patients and their loved ones with the physical and psychological burden of Neuroendocrine Cancer – to have their individual and collective voice heard.

Advocacy Initiatives:

Promoting self and informal individual advocacy – through discussion and support:
Disability Rights UK defines self-advocacy as “the ability to speak up for yourself and the things that are important to you. Self-advocacy means you are able to ask for what you need and want and tell people about your thoughts and feelings”.


  • NCUK Ambassadors : NCUK was co-founded by patients for patients, our NCUK Ambassadors work with us on all of projects and services maintaining the patient centric ethos that underpins everything we do
  • Patient centric services : Helpline, online forums , Natter support groups – in person and online, and dedicated Telephone Counselling Service.
  • We can assist in PIP appeals, working alongside individuals to support them through this process, acting as advocates for appeals/tribunals where requested. Also grant applications , but recommend expert independent advice is sought for benefits applications.

Formal individual and systems advocacy:

  • Medicines and Health Technology Appraisals submissions – that is, representing patients experiences, concerns and hopes for “new’ treatments e.g. Lutetium (177Lu) oxodotreotide for treating unresectable or metastatic neuroendocrine tumours


    • Policy makers & influencers – working with organisations to promote equality and standards of care for the Neuroendocrine Cancer community – at a local, regional, national and international level: our involvement and presence at each of the following is informed by our community’s expressed needs and concerns:


  • INCA is the global voice for Neuroendocrine cancer (NET) patients and their carers with a mission to:
    • Raise awareness about all types of NETs;
    • Push for scientific advancements with a focus on identified unmet needs;
    • And provide a platform for global collaboration to address the many challenges NET patients and the medical community face, in securing a timely diagnosis and accessing optimal treatment, support and care;
  • WECAN IS is an informal network of leaders of cancer patient umbrella organisations active in Europe.

There mission is to act as a well-coordinated cancer patient community towards all stakeholders by building levels of trust, collaboration, alignment and mutual support between pan-European cancer patient umbrella organisations

  • EURACAN is the ERN for adult rare solid cancers: 1 of the 24 ERNs working on a range of thematic issues. The ERN for adult rare solid cancers is coordinated by the Centre Léon Bérard with the objective to improve the quality of care for all European citizens affected by rare cancers, while ensuring an optimized and homogeneous care and access to innovation, is provided throughout the EU member states.

NCUK’s CEO is the current president of INCA and is involved in the WECAN and EURACAN groups as an INCA representative

  • QH/ENETs work : design, development and dissemination of a pan-European Patient Experience Questionnaire for ENETs : The purpose of the survey is to provide information which can help the European Neuroendocrine Tumor Society (ENETS) monitor and improve the future quality of health services and social care for people with Neuroendocrine Cancer at specialist NET Centres.