Supporting the

Neuroendocrine Cancer Community

A look back at 2018 and what 2019 has in store for NPF…

Jan 7, 2019

2019 has arrived and we have been taking a look back at some of our key activities from the past 12 months.

At the NPF we ensure that all of our work is focussed on at least one of our five pillars of activity; education, support, awareness, advocacy and research. We have been sharing these activities over on Facebook and Twitter so please head over to find out more about what we have been up to this year. 

As we share our 2018 journey with you, we ask that you help us to continue supporting the Neuroendocrine Cancer community next year by simply donating whatever you can to NPF.

Here are some of our 2018 achievements:

  • We attended the Cancer Charities Roundtable alongside NHS England, where we discussed the real life issues the NET community faces.
  • We produced a Newly Diagnosed Patient Pack and a Diet and Surgery to the Digestive System Guide
  • We held 4 Patient Education Events around the UK.
  • We had a jam packed NET Cancer Day, where we brought together specialist NET teams to share their knowledge of NETs at a Patient Conference, held coffee mornings across the UK raising awareness amongst local communities and we launched our Neuroendocrinologists of the Future campaign to stimulate interest in the speciality of NETs. We then ended the day with a Black and White Ball for a night all about NETs!
  • We held an awareness session for GPs. This session was a great opportunity for us to help raise awareness of Neuroendocrine Cancer with GPs and we received some very positive feedback.
  • We conducted a global survey to establish what support needs Merkel Cell patients have. We also created a dedicated Merkel Cell Carcinoma (MCC) patient information booklet. We hope that this booklet will make it easier for MCC patients to make decisions about their cancer by helping them to learn more about it and the possible treatments.
  • We held our Walk for NETs campaign throughout the summer, which raised over £10,000!
  • We attended a full council meeting in Hackey where Hackney Council, in an extraordinary step, unanimously voted in favour of a motion that sets out the actions it could take to address the issues affecting anyone with a rare or uncommon cancer. You can read the full article here.
  • We launched 2 online community Facebook groups (NET Natter UK Online & NEXT2NETs) and held 3 very successful Q&A Live Facebook sessions.
  • We hosted the first European dietetic group meeting where 25 dieticians came together from across the UK, the Netherlands and Denmark to educate and share issues that are effecting NET patients.
  • We held over 190 NET Natter Support Groups reaching over 600 people.

This year looks to be another big year, and all the preparation has been done to ensure that one day we can achieve our vision. 

We have a new patient self management tool in the form of an App being launched, new patient information on Lung NENs, all new patient factsheets based on clinical evidence, the first ever published data on incidence and prevalence of NENs in the UK, and of course WE WILL continue with all our other services. We hope many more hospitals will ask for the packs for new patients, that many of you attend one of our 4 patient education events that will run throughout the year, or join one of the 100 NET Natter meetings already in the diary for 2019. We will also be preparing for our first ever national NET summit in 2020, so keep an eye on the website. 

We couldn’t achieve our work without the support of our volunteers, our dedicated trustees, our Patron, Professor Martyn Caplin, and our fundraisers and sponsors. A heartfelt thanks to you all.

We would also like to thank everyone that has supported the organisation including; our colleagues at UKINETSENETS and INCA, all the healthcare professionals we have collaborated with, both here in the UK, and across the globe, to all the fundraisers, awareness raisers, our charity partners and friends and our NET Natter co-ordinators. Everything you have done has enabled us to provide a wider service to our community. 

Thank you. 

From all of the team at the NPF.

Please support us throughout 2019. 

In 2018, our help line was a lifeline to hundreds of people affected by Neuroendocrine Cancer, who needed personalised information and emotional support from our specialist nurses at a difficult time. Over 400 email and telephone enquires were handled by our nurses, ranging from questions about diagnosis, support management, symptom advice, treatment options and practical support. 

We are a small but vital charity and rely on the generosity and kindness of people like you to continue supporting the Neuroendocrine Cancer community.

Please make a donation today and help us to be there for more patients and their loved ones.