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
RareMinds “Mindfulness for pain, fatigue and anxiety” course
Day: every Thursday from 11th May - 29th June 2023 Time: 10.30am - 12.30pm In March this year, our counselling and psychotherapy partners at RareMinds ran an Online (Zoom) taster session on ‘Mindfulness for Pain and Fatigue’ for our Neuroendocrine Cancer community. ...
Rare : not widely known; not frequently used or experienced; uncommon or unusual
Rare : not widely known; not frequently used or experienced; uncommon or unusual. “The mantra of ‘hear hooves, think horse not zebra’ is greatly contributing to diagnostic delays and poor patient experience” says Dr Lucy McKay, founder of Medics4RareDiseases. “The...
Sex Differences in Survival from Neuroendocrine Neoplasia
Sex Differences in Survival from Neuroendocrine Neoplasia in England 2012 & 2018: A Retrospective, Population-Based Study : published 20th March 2023. A retrospective, population-based study comparing overall survival (OS) between males and females with...