NET Patient Foundation

New joint venture with AMEND to support Adrenocorticol Carcinoma (ACC) patients

maiasissons — Wed, 17 Apr 2013 14:41:40 +0000

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 →

Crowd diagnosis could spot rare diseases doctors miss

maiasissons — Wed, 17 Apr 2013 11:57:11 +0000

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 their background or training. Participants are given points that they can then use to bet on the correct diagnosis from lists of suggestions. This creates a prediction market, with diagnoses falling and rising in value based on their popularity, like stocks in a stock market. Algorithms then calculate the probability that each diagnosis will be correct.

To see the full article on this, and other innovations aimed at improving routes to diagnosis, please see http://www.newscientist.com/article/dn23392-crowd-diagnosis-could-spot-rare-diseases-doctors-miss.html.

Seeking patient representative for new clinical trial

maiasissons — Tue, 16 Apr 2013 11:36:46 +0000

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 new treatment (Vandetanib) alongside the current standard treatment, MIBG.

We plan to open the trial in October 2013. It is very important to us to have the input and representation of the patient group that we will be treating whilst setting up and running the trial. There will be regular trial group meetings which will take place 3 or 4 times per year in London. You would not necessarily have to attend in person, and we would cover any expenses you incurred by taking part in these meetings. These will start in the Autumn of 2013 and continue for 2-3 years. You will also be asked to review and comment on the trial protocol and other trial documents, especially the patient information. The trial will be open in two centres in London – University College London and Guy’s Hospitals, and Manchester – Christie Hospital.

If you would like any further information about the trial, the role of the Patient representative and time commitments please contact: -

Dr Christina Thirlwell or Dr Deb Sarker

Christina.thirlwell@ucl.ac.uk

Debashis.sarker@kcl.ac.uk

Support our NPF Marathon runners!

maiasissons — Mon, 15 Apr 2013 15:36:54 +0000

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, along with a number of ‘cheer squads’ from Wellington College, to give whoops of encouragement to our fantastic four. Do look out for runners and supporters sporting NPF shirts!

Please help to show your support by donating:

Dr Anthony Seldon - http://www.justgiving.com/AnthonySeldon5

Patrick Allen - http://www.justgiving.com/Patrick-Allen1

Gareth Carr - http://www.justgiving.com/Gareth-Carr12

Lig Hill - http://uk.virginmoneygiving.com/lighill

RCF Patient Empowerment Day

maiasissons — Mon, 15 Apr 2013 15:05:01 +0000

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 opportunity for patients, carers and their families to gain a better understanding of the care and support that they should expect following diagnosis with a rare or less common cancer.

It is vital that patients are confident that they are receiving the best possible service and treatment from the NHS and this conference is designed to inform and empower patients how to take an active/joint role in all decisions made about them.

The conference will explore many of the options available to patients such as referrals to expert second opinions, specialist cancer centres, clinical trials, radiotherapy, access to drugs and much more besides.

The conference will also include an exciting session which will focus specifically on how you can help to campaign for improvements and better outcomes at both local and national levels for cancer patients.

Attendees will be able to participate in a 1 to 1 session with advocacy experts where you will be able to receive individual advice and support to help overcome specific barriers that you may be facing such as how to access latest treatments or drugs, lack of information and support, access to clinical nurse specialists etc.

This event is designed to be informative, supportive and inspiring for patients at all stages of their cancer journey. We want you all to have a better understanding of who is involved in your care and how you can have a positive impact and maybe help improve services and support for all rarer cancer patients.

Please email Debbie de Boltz at debbied@rarercancers.org.uk or telephone 0208 692 2910 and ask for a London Patient Day registration form or download one here. Places are limited for this event and will be allocated on a first come first served basis so please register without delay to avoid disappointment.

Early diagnosis toolkits delivered to GPs throughout the UK

maiasissons — Mon, 15 Apr 2013 15:01:43 +0000

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 hope that this will have some impact on raising awareness of NETs as a diagnosis and encourage referral to a relevant NET clinic. We know that having an effective multidisciplinary team including a nurse specialist is so vital for the patients and their families, and we will be producing a review of all NET services around the UK so that it is clear to see who is doing what, where, how and why.

Next NET Natter meeting in Hull on 16th April

maiasissons — Wed, 27 Mar 2013 10:20:16 +0000

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 →

“No clear pathway” for NET patients in Canadian study published this week

maiasissons — Wed, 27 Mar 2013 09:00:33 +0000

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 study’ describes the results of a survey carried out in the Odette Cancer Centre in Toronto.

The study concludes that “Patients with NETs had ‘no clear pathway’ of care in their cancer journey. A multidisciplinary specialized clinic for NETs is recommended as well as a strong role for nursing in providing support and building patient and family resilience.”

Get ready for the East Coast Walk… 2013!

maiasissons — Tue, 26 Mar 2013 13:29:13 +0000

After a hugely successful East Coast Walk 2012 and lots of positive feedback from those who took part, we’ve decided to do it all again this year!

We can’t guarantee the same glorious weather this time around, but what we can promise is a a lovely walk in a spectacular setting to remember a very special lady whilst raising lots of money for a very deserving cause.

Last year over 80 people took part in our event and together we raised a massive £4,151 for the NET Patient Foundation. Please help us make this years event just as good by joining us in Flamborough to do the 8 mile walk on Saturday 21st September 2013.

More details will follow closer to the time, but if at this stage you could make a note of the date and also let us know if you’re interested in taking part by sending an email to

walsh351@btinternet.com

that would be really helpful for our planning.

As last year, it will cost £10 per person to take part, all of which will go to the NET Patient Foundation.

Thank you for your continued support,

Brian and Sarah Walsh

Friends of NPF row more than 1,200,000 metres in support of NET patients

maiasissons — Wed, 20 Mar 2013 09:10:27 +0000

Our thanks and congratulations to a dedicated team of rowers, who turned out on a Saturday morning in March in support of their friend Matt to attempt to row the distance between London and Sweden (around a million metres).

They far exceeded their goals, covering a massive 1,200,000 metres, and raising a whopping £11,100, plus nearly £5,000 in matched funding from GAM (UK) Ltd (Karen Harding). This is only the first of several challenges this group will undertake this year.

Please support them by donating on their JustGiving page: http://www.justgiving.com/thislifematters

You can read more about this amazing challenges, and others, at http://www.thislifematters.co.uk/rowing-to-sweden