News from the NET Patient Foundation

NET Patient Foundation have a brand new pack for Neuroendocrine Cancer patients. The pack is filled with lots of useful information created specifically for NET patients. We have also updated our handy wallet cards for Neuroendocrine Cancer patients to keep in their wallet in case of an emergency. The three wallet cards available are; a toilet card, a bowel obstruction card and a carcinoid crisis card. Orders for patient packs and wallet cards can be made on the NPF website.
One of NET Patient Foundation’s core activities is patient education. Factsheets for all the different types of NET’s can be found on our website. During a recent review to update the Merkel Cell Carcinoma (MCC, a rare type of skin NET) factsheet we were surprised to find very little information that we could signpost patients too. It is a major concern to us that at a time when patients are a their most vulnerable and need information the only place they have to turn is to social media. This has led us onto a bigger project to design and distribute patient information specifically for MCC patients. Since the beginning of 2018 we have been working closely with MCC clinical experts and patients to find out what the unmet needs of MCC patients are through an online survey. We are currently in the final stages of putting together this booklet and it will be available later this year.

This summer NET Patient Foundation wants as many people as possible to hold a Walk for NETs to help us continue providing community support to anyone affected by Neuroendocrine Cancer.

There are over 4,000 people diagnosed with Neuroendocrine Cancer each year in the UK, and it costs us around £1,000 to provide all of our support services to one patient for one year. We want to be there for more patients and their loves ones – so we know we need to do more!

We can’t do this alone. Your small steps can help us take on NETs.

Sign up today to hold your own Walk for NETs.