Assessment of major gaps from the perspective of patients, patient advocates and NET health care professionals.
Due to the increasing incidence and prevalence of neuroendocrine tumors (NETs), there is a need to assess any gaps in awareness and care. A survey was undertaken in 2017 to identify perceived unmet needs from the perspectives of patients/families, patient advocates and health care professionals (HCPs). The survey consisted of 33–37 questions (depending on type of respondent) across four areas: information, care, treatments and research.
Recent News
Mounjaro® (Tirzepatide) & Neuroendocrine Cancers
We have had a number of enquiries about the use of Mounjaro® (Tirzepatide) and similar medications (e.g. Wegovy®, etc) in individuals with neuroendocrine cancer. Here we provide a summary of information currently available, which we hope will address some of the...
URGENT UPDATE 9TH JULY – Rare Cancers Bill
Update 11th July 2025 Delighted to see Dr Scott Arthur's Rare Cancers Bill pass through third reading in the House of Commons on Friday. This Bill is a crucial step forward for those living with rare and less common cancers. Thank You to everyone who contacted their...
URGENT ACTION NEEDED – CHANGES TO PIP PROPOSED
URGENT ACTION NEEDED The impact of cancer is far more than medical. With it, comes a hidden and often devastating financial burden that many do not see or expect: the ripple effect extending to family members and carers. From travelling to receive the right treatment...