NET News
14 June 2013
New NET Natter Group in the Midlands
The first meeting of the Midlands NET Natter Group will take place on 17th July (10am – 12) at the Ramada Birmingham. For more details see the flyer here: patient group midlands
10 June 2013
Watch This Life Matters team row a million metres!
Our huge thanks to the incredible team at This Life Matters, who have just posted this wonderful video of their event in March, when they rowed a million metres to raise awareness of neuroendocrine cancer. To date, the team has … Continue reading
3 June 2013
Manchester Patient Meeting 13th July
Register now for our patient education day on Saturday 13th July. For more details, see the agenda here.
28 May 2013
NET resources for health professionals
Following the success of our GP toolkit, we are producing a range of resources for medical students and health professionals. We now have in stock a number of these fantastic A4 pads, which use very clear diagrams to show parts … Continue reading
28 May 2013
Lovely moth jewellery for sale
These beautiful sterling silver moth friendship bracelets and matching necklaces have been especially designed for the NET Patient Foundation. The bracelets are available for £14 inc. P&P, and the necklaces are £15.50 inc P&P. They make fabulous gifts, and … Continue reading
28 May 2013
Remember Gemma Fun Run
Sunday 29th September 2013 – Coven Memorial Hall Friends and family of Gemma Coven, who passed away from a neuroendocrine tumour at the age of 34 last August, are organising a number of events to raise money for the Foundation … Continue reading
28 May 2013
NET Endurance Cycling Challenge – 23rd June
The incredible team of friends behind ‘This Life Matters’ have set themselves a new challenge: to cycle one mile for each person diagnosed with a NET – that’s around 3,150 per year. This will mean a team of 25 cyclists … Continue reading
28 May 2013
Sam, Declan & Jacob take part in Tough Mudder for NPF
Esther Edward’s grandson, Sam Rudgley, is doing the ‘Tough Mudder’ for the NPF on the 8th June at Matterley Estate, Temple Valley, Altersford Road, Winchester, Hampshire. He is doing this 12 mile army assault course with 2 other friends: Declan … Continue reading
28 May 2013
NET Natter groups update
We are delighted to see new patient support groups springing up around the country. If anyone is interested in starting a group, please contact us on 01564 785577 or at hello@netpatientfoundation.org. We would be particularly interested to hear from anyone in … Continue reading
28 May 2013
Carlisle family’s mission to build a lasting legacy
Father-of-two Gary Laidlow from Carlisle was aged just 40 when neuroendocrine cancer claimed his life in February last year. Gary’s family and friends held a fundraising event last month, where they raised over £1500 for the NET Patient Foundation. … Continue reading
28 May 2013
Run the British 10K London for the NPF!
We have 6 places available for this fantastic charity run on Sunday 14th July, which takes you on a scenic route past most of London’s major landmarks. It promises to be a fabulous day for runners and spectators, and is … Continue reading
27 May 2013
3rd Annual ‘Andycap Golf Day & Dinner
Julie Cripps is organising the 3rd consecutive annual ‘Andycap Golf Day & Dinner (in memory of her husband Andy) which is due to take place on Saturday 15th June at Sutton Green Golf Club, near Guildford, when, after a day … Continue reading
17 April 2013
New joint venture with AMEND to support Adrenocorticol Carcinoma (ACC) patients
We are delighted to have heard that Macmillan will be sponsoring a new service for ACC patients, to be run as a joint venture between AMEND and the NPF. Initial activities will include: Produce updated patient information Set up a … Continue reading
17 April 2013
Crowd diagnosis could spot rare diseases doctors miss
Diagnosing less common conditions could get easier, thanks to new web-based tools that pool information from a wide variety of sources. CrowdMed is a new website that aims to do just this. Anyone can join CrowdMed and analyse cases, regardless of … Continue reading
16 April 2013
Seeking patient representative for new clinical trial
We are looking for a Patient representative to sit on the Trial Management Group for a new clinical trial in patients with paraganglioma or phaeochromocytoma. The trial – “VIBRaNT” is looking to investigate the effect and safe delivery of a … Continue reading
15 April 2013
Support our NPF Marathon runners!
Wishing the best of luck to our four wonderful runners, who will all be taking part in the London Marathon this Sunday 21st April, and raising money for the NET Patient Foundation. We will be taking to the streets, … Continue reading
15 April 2013
RCF Patient Empowerment Day
The Rarer Cancers Foundation is holding a Patient Empowerment Day at The Holiday Inn London–Bloomsbury Coram Street, London WC1N 1HT on Monday 3rd June 2013 10.00am – 3.30pm This rare and less common cancer patient day is an ideal … Continue reading
15 April 2013
Early diagnosis toolkits delivered to GPs throughout the UK
A huge thank you to all of our wonderful helpers who have helped deliver 5,000 toolkits around the UK. The NPF have sent the interactive PDF to every GP in the country via the new Clinical Commissioning Groups, so we … Continue reading
27 March 2013
Next NET Natter meeting in Hull on 16th April
Many thanks to Lesley, who organised the first Hull NET Natter meeting on 26th March. She’d very much like to see more people at the next meeting, which will start at 1pm on 16th April. Meeting place is the main … Continue reading
27 March 2013
“No clear pathway” for NET patients in Canadian study published this week
A survey published in the European Journal of Nursing Oncology this week shows that NET patients in Canada still have ‘no clear pathway’ in the diagnosis and treatment of their disease. ‘Patient Experiences of having a neuroendocrine tumour: a qualitative … Continue reading