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
Olutaton®
Neuroendocrine Cancer UK has been made aware that there is an imminent issue regarding the availability of Olatuton® (Octreotide long-acting) somatostatin analogue injections. This is due to a legal issue that has led to the withdrawal of Olutaton®: it will not be...
Why do we have a Moth on our logo?
In medicine, the term “zebra” is used in reference to a rare disease or condition. “If you hear hooves, you assume horse.” The rare disease community wants you to consider zebra. We agree with and advocate this message. However due to the rise in incidence of...
When Nikie met Sally…
I first met Sally in 2015, not long after I started with NCUK - little did I realise, at the time, what an incredible force of nature this softly spoken lady is. Sally is a retired computer systems analyst and lecturer living in South Wales. She was first diagnosed...