Neuroendocrine Tumour Support Group

Centre of Excellence Awarded to St Vincents

St Vincents University Hospital was recognised and awarded a Centre of Excellence certificate for NETs as the 39th ENETS Centre of Excellence at the ENETS Conference in Barcelona on Friday March 10th.

The NETs clinic in St Vincents was audited last November after our patient day. The review panel from ENETS was satisfied that the clinic meets its criteria for providing the best of care for NET patients under the ENETS Centre of Excellence programme.

This is a great achievement and underlines that all Irish NET patients should seek referral for review and/or second opinions to the NETs clinic in SVUH or through one of the satellites in Cork and Galway. The NET expertise is here and your best chances of survival are by getting clinical review and treatment advice through this centre of excellence.

We all know that the clinic in SVUH is not perfect and a lot more needs to be done. We need to push for more resources, more nurse availability, finalising the Ga-68 PET scanner, better and smoother referral options, and so many more.

However, this award is a positive step forward for NET patients in Ireland and sets NET services in this country on a formal setting. It gives us, NET Patient Network, the opportunity to ensure that NET patients have a voice which is heard and to give our feedback on how the direction and delivery of NET services in this country is working. As a patient group, we plan to use it.


Photos & Videos from the 2016 NET Patient Day

Photos from the patient day the 2016 NET Patient Day can now be viewed on our Flickr account
https://flic.kr/s/aHskP6Ee5V

Photos from our previous patient days can also be viewed on that Flickr account.

The videos from the talks on the day are on our YouTube channel.
http://www.YouTube.com/NETPatientNetwork


Thunderclap November 10th 2016

Thunderclap Starts Tomorrow, are you in?

This takes less than 30 seconds;

What is it?

Thunderclap describes itself as a ‘crowdspeaking’ platform. What that means is a number of people (in our case at least 100) putting exactly the same phrase / message out via social media channels such as Twitter or Facebook at exactly the same time.

 

Why is that a good thing?

Social media is a busy place, if the same message goes out from multiple sources at the same time it raises our chances of people seeing the message and taking notice. In this case we want people to be made aware of the new report being launched by the NET Patient Foundation and highlight the fact that current strategies for cancer are not always appropriate for people with a cancerous NET or other rare or less common cancers

How can I help?
– Click on this link: http://thndr.me/n3p3Qx

– You will then be taken to the Thunderclap page where you will be given an option of supporting via Twitter, Facebook or Tumblr – please pick the option where you have the biggest audience

– Thunderclap will ask to be given access to your friends / followers – don’t let this put you off. Thunderclap only use this to send out the message at the pre-agreed time. They don’t spam you or contact any of your friends/followers. In fact you won’t hear from them again

– You will be shown our short message and asked to click on a button to support it, please do so

– That’s it! Should take around 30 seconds in total

What happens next?
Nothing will happen immediately but if we hit our target of 100 sign ups then the message will go out to your contacts on Facebook, Twitter or Tumblr at 12.00 noon on NET Cancer Day (Thursday 10 November). You will also be given the option to let others know you have supported the Thunderclap – please do so. Thank you!

 


Details Of NET Patient Day 2016

Our Annual NET Patient day is November 12th this year, in Dublin.

Click Here for all the details.

 


NET Policy Recommendations For Europe

The 1st Telephone Conference, (T-con), of the NET Platform took place in May 2016.

It was decided that the minutes and Executive Summary of the NET Recommendations Papers would be released simultaneously throughout Europe today, before World Net Patient Day.

The platform was set up to support, following the visit to the Parliament last year by the group:

More Info Here


NET Patient Network now members of INCA

We are officially members of INCA, (International Neuroendocrine Cancer Alliance).

More info here


NET Patient Day 2016 Venue

The 2016 annual NET Patient Day, 2016, will be held on Saturday November 12th in the Maldron Hotel in Tallaght, Dublin 24. More Info


NET Patient Booklet with the help of Novartis

We now have a NET Patient Booklet, thanks to Novartis.

NET Patient Booklet


Two Announcements

The Videos & Photos from the NET Patient Day 2015 are now on-line.

You can find the YouTube Videos here;

https://www.youtube.com/user/NETPatientNetwork

You can find the Flickr Photos here;

https://www.flickr.com/photos/netpatient/albums/72157666016202305

ALSO

NET2016 will be on Nov 12th 2016 in Dublin at a venue yet to be decided.


NET Newsletter – October 2015

NET Patient Day 2015, Sat Nov 14th, 2015, Cork University Hospital

The annual NET Patient Day 2015 will be held on Saturday November 14th in Cork University Hospital, Wilton, Cork (click here for location).

https://www.google.ie/maps/place/Cork+University+Hospital/@51.882886,-8.510574,15z/data=!4m2!3m1!1s0x0:0x7ed8176dea5eafa5

The event is free, all Neuroendocrine Tumour and Carcinoid patients and their family and friends are welcome to attend.

Parking will be provided free by the hospital (car park tickets will be validated at the end of the day).
There will be free tea and coffee in the morning at registration and a light lunch of tea/coffee and sandwiches will be provided for free in the CUH canteen.

As always, we expect a great attendance and we are greatly supported by the NET clinicians form around the country who will attend.

Our international guests this year are Prof. Barbro Eriksson and Ms Jenny Falkerby from Uppsala. The emphasis this year is on the Q&A session with the NET clinicians which is always of great benefit to patients and their families. In the afternoon, we have a talk on “NETs and Nutrition” followed by “Mindfulness – Living with Cancer”.

We ask that if you are planning to attend, please let us know by sending an email to info@netpatientnetwork.ie telling us how many will be in your party so that we can properly plan for lunch and seating.

See below for information on hotels.

Timetable for the event:

08.30 – 09.30 Registration with tea/coffee
09.30 – 10.30 Talks on Irish NET information
10.30 – 12.45 Open Q&A with NET practitioners
12.45 – 13.45 Lunch
14.00 – 14.45 NETs and Nutrition
14.45 – 15.30 Mindfulness – Living with Cancer
15.30 – 16.00 Wrap-up and closing address
We hope to see you all there.
Saturday November 8th 2014

Be sure to let us know that you are coming

Hotel Bookings for NET2015

For those of you that wish to stay in Cork on Friday before the event we have negotiated special bed and breakfast rates with two hotels.

When booking, be sure to mention NET Patient Network to avail of these rates.

Oriel House Hotel

First ten rooms at €99 B&B for double/twin or €70 B&B for singles
Thereafter, rooms are €109 B&B double/twin or €80 B&B for singles
Phone 021-4208400
Address – Ballincollig, Co. Cork
Approx 15 minute drive to CUH
Link to map:
http://www.orielhousehotel.ie/hotellocation.html
CUH is on the right of map

River Lee hotel

Twenty rooms allocated for Friday night at rate of €100 B&B for double/twin/single (no reduction for singles)
Ten rooms are currently allocated for Saturday night at the same rate
Phone 021-4252700 (ask for Deimante or Ruarí)
Address – Western Road, Cork (click here for location)
Approx 10 minute drive to CUH
Link to map:
https://www.doylecollection.com/hotels/the-river-lee-hotel/location

To see CUH, follow the N22 towards the south west ( towards the bottom left corner of screen), then follow the N71 passing Dennehys Cross.

NET2015 Friday Night Get-Together

We would like to strengthen the NETs community by trying to get everyone together who is available on the Friday night before the NET 2015 event for a casual get-together and a chat.

We will meet up in the lobby or bar of one of the two hotels above on the Friday evening at 8pm and stay until about 10pm.

All the members of the NET Patient Network committee will be there and we would love everyone to come along and say hello.

We will let you know where exactly the get-together will be held closer to the event.


NET Patient Day 2015, November 14th, in the Cork.

Our NET Patient Day 2015 is on November 14th 2015, in the Cork University Hospital, (CUH) , in Cork.

net2015

Net Patient Day 2015

Here is a link to a PDF version that is much bigger. net_poster_2015_A4


The NET Patient Network Goes Social

We are delighted to announce that the NET Patient Network is going Social. While there are many different types of Social Media to choose from, we have decided that Facebook® offers the best mix of services to help our members.

We have build our Facebook Page to make it easier for you to keep informed and various Facebook Groups for discussion.
As of today, all members are welcome to join them, to help build the Community side of the NET Patient Network.

We look forward to seeing you there and hope you will make use of the opportunity to receive support from & offer support to, Irish NET Patients, Caregivers of NET Patients & Families of NET Patients.

To help you get set up, we have written instructions, you can start by clicking here or going to http://netpatientnetwork.ie/index.php/forum/facebook/


 

National Cancer Registry Ireland April 2013 report says there were 830 registered NET patients at the end of 2010

NET Patient Network is an organisation of Neuroendocrine Tumour (NET) patients in Ireland.  We formed NET Patient Network in 2012 to provide information and support services for NET patients in Ireland.

The primary purpose of NET Patient Network is to put Irish NET patients in touch with each other so that we can collectively help and support each other through living with our disease.  Both newly diagnosed as well as existing patients, some of whom have lived with NETs for many years, can get great benefit and comfort from interacting with and supporting each other.

Our first objective is to compile a list of all NET patients in Ireland. We want to give greater weight to your voice in dealing with the HSE and the medical establishment.

We plan to have an annual NET Patient day where we hope to gather as many NET patients and their families together with Irish and international doctors.  We will have group discussions and questions and answers with experts in the field.

Click here to view the last Patient Day

Join NET Patient Network

Please join us as a NET patient or family member so that we can strengthen our voice in dealing with the medical establishment and keep you informed of news and events in Ireland.

As patients, we have all faced the day when we were given our diagnosis and the world fell apart for us and our families.  At this terrible time, we naturally seek more information, to know more about our disease and to want to know what is ahead for us.

This website attempts to provide information with an Irish focus for newly diagnosed and existing NET patients in Ireland.  It will also disseminate information about events and news related to NETs.It can be a great comfort to talk with other patients and share experiences.

Our final objectives are to establish and maintain active links with the Irish medical establishment and with international NETs groups.  NET Patient Network will advocate for the establishment of best medical practice, as implemented in other jurisdictions, and for best service levels to be provided to Irish patients.