UKINETS Archives

Tag: UKINETS

UK and Ireland Neuroendocrine Tumour Society [UKI NETS] came about in the year 2000 with a meeting of UK and Ireland neuroendocrine experts. At the time there was little interaction amongst the specialists with people working within their own small teams to manage these incredibly complex conditions. To compound matters there was a lack of evidence for treatments being used with no structure in place to deliver large scale trials. The UK-NETwork was created to meet these challenges. This later transformed in to UKI NETS.

The society represents scientists, nurses, allied health care workers and clinicians involved in providing services to NET patients. The society’s aims are to:

Standardise practise in UK and Ireland
Improve standards of NET services in UK and Ireland
Support setting up specialist services
Promote education
Promote collaborations
Promote clinical trials and research

31 Oct 2025

By Ronny Allan

15 Comments

Neuroendocrine Cancer? – Where to find a NET Centre/Specialist Worldwide

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipCarcinoid syndrome, Chemotherapy, Diet, Genetic testing, Hormones, Incurable cancer, Malignant, Multidisciplinary team (MDT), Multiple Endocrine Neoplasia (MEN), NET syndromes, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET), Nutrition, Palliative care, Quality of LIfe (QoL), special, Surgery, Thorson-Bioerck syndrome, Tumor board, UKINETS

Scroll down to check out the doctors list just below Important note The accuracy of these lists depends on the accuracy of the sources. If you think the source is wrong, let them know, not me. However, you can also join my private Facebook group and someone in there will often be more up to date than the source! To the best of my knowledge, this the only attempt at a worldwide list of specialists. Finding experts Many people ask for a definition of a "NET Specialist". There's also discussions surrounding Multidisciplinary Teams (MDT)/Tumor Boards and Centres of Excellence (CoE).…

18 May 2024

By Ronny Allan

30 Comments

Neuroendocrine Neoplasms – not as rare as you think

Awareness, Living with Neuroendocrine Cancer, Patient AdvocacyHodgkin lymphoma, Incidence, International Classification of Diseases (ICD), International Classification of Diseases for Oncology (ICD-O), Lung NETs, Myeloma, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Pancreatic NET (PanNET), Prevalence, Quality of LIfe (QoL), Rectal NET, SEER, Small cell lung cancer (SCLC), Small intestine NET (SI NET), Testicular cancer, UKINETS

UPDATE AS AT 5th OCTOBER 2025 -USA - Prevalence of Neuroendocrine Neoplasms breaches the Orphan Disease threshold for the first time (officially) In this cross-sectional study evaluating 145,477 NEN cases in the US, age-adjusted incidence rates increased 5.2-fold between 1975 and 2021, with an annual percentage change of 3% between 2000 and 2020, and the 20-year limited duration prevalence projected in the US population on January 1, 2021, was 243 896. Survival for all NENs improved, including for patients with distant-stage gastrointestinal and pancreatic NENs. And even this figure is understated as they have excluded some Neuroendocrine Carcinomas from the list…