News from the NET Patient Foundation

NET Patient Foundation aims to support and inform patient and families from diagnosis, enabling access to the best care and treatment, whilst stimulating Neuroendocrine Cancer research, increasing national awareness and influencing improvements in outcomes.

Our support services are a key aspect of our work and are available for anyone affected by a NET. Our NPF nurses, clinical advisory board and counsellors are available to support patient and family needs in the community.

Our clinical fund supports pilot research projects in the UK. We run part of our research programme in collaboration with our friends at UKINETS. 2018 also marks the beginning of our research road trip to identify outstanding research needs for the benefit of patients with NETs and NET syndromes and to devise a research strategy for the same, ensuring that current research is in line with patient expectation. This road trip is a collaborative initiative with AMEND.

We strive to be an evidence-based advocacy group, collecting real-life data from the NET community to drive change in both commissioning for NET treatments and clinical practice. 2018 will bring with it a few surveys, these are imperative for us to understand your needs, so please take part if you can.

The development of high quality educational materials is a key objective of ours, and the production of our NET Handbook has been a real achievement with over 2,000 copies distributed in 2017. Last year we also set up a new service for Merkel Cell Carcinoma (MCC/Skin NET) patients and the launch of a new information booklet. A Global MCC patient survey is due to take place in February 2018.

This year we want to raise more awareness of Neuroendocrine Cancer. One of the best ways to raise awareness is to share unique stories about experiences as a patient diagnosed with a NET and also the stories from a loved ones perspective. We are looking for new stories that we can use to raise awareness, so please help us by sending your story to [email protected].

We are very excited to announce that we have charity places in the following runs: Edinburgh Half Marathon, Virgin Sport British 10K, Great North Run and Birmingham International Marathon. If you are interested in securing an NPF charity place then please follow this link for more information.