Neuroendocrine Tumour Support Group

NET Patient Information Videos

NET Patient Network is delighted to announce a major information initiative.

Three new videos featuring experts in NETs care and patients with first-hand experience of living with the condition have now been uploaded to our YouTube Channel.

The First video tells the story of the National Centre of Excellence at Saint Vincent’s University Hospital, Dublin.

The second video explains how the support group attempts to help NET Patients and their families.

A Cork-based NETs patient presents the third video. It explains the range of services available to patients cared for by the Mercy University Hospital.

You can get more information about the videos & links to all three videos by clicking here.


Expand Your NETwork

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Saturday Nov 3rd, 2018

Devere Hall, University College, Cork

The annual NET Patient Day 2018 will be held on Saturday November 3rd in Devere Hall, University College, Cork (click here for location).

This year we are coordinating our patient event with the Southern Symposium, a special medical conference on NETs being held in UCC. The patient event is free and all Neuroendocrine Tumours and Carcinoid patients and their families and friends are welcome to attend.

The planned schedule will be the same as in previous years. We will start the day with tea and coffee from 8.30am, begin the talks at 9.15 with patient focused information from the NET specialists and follow this with an open Q&A session which is always of great benefit to patients and their families.

The current planned timetable is:
 

 08:30 – 09:10  Registration with tea/coffee
 09:15 – 09:20  Opening by NET Patient Network
 09:20 – 09:35  Welcome (Mr Críostóir Ó Suilleabháin)
 09:35 – 09:50  A Patient Perspective (Mr Tommie Gorman)
 09:50 – 10:05  NETs in Southern Region (Mr Derek Power)
 10:05 – 10:15  Developments in NETs in Ireland (Prof Dermot O’Toole)
 10:15 – 10.30  An international view (invited guest speaker)
 10:30 – 11.00  Somatostatin Analogues by Novartis and Ipsen nurses
 11:00 – 11:30  Tea & Coffee
 11:30 – 13:20  Q&A Panel with NET Specialists
 13:20 – 13:30  Wrap-up and closing address
 13:45  Buffet Lunch
 

There will be free parking on the day in The Geography Car Park in UCC on a first-come-first-served basis. This car park is open to the general public on Saturday so please get there early. The UCC Visitor Car Park is further up the road beside Hayfield Manor Hotel but please note that this is a paid car park.

There will be free tea and coffee during the morning and a buffet lunch will be provided for free at the end of the day following the closing address which should be around 1.45pm.
 
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.
 

We hope to see you all there
Saturday November 3rd 2018
Be sure to let us know that you are coming!
 

 

Friday Night Get-Together

The Friday night get-together has become a tradition and is a great opportunity to meet up with fellow patients and family/friends in an informal setting. This year we will have our get-together in The Kingsley Hotel bar area. We will meet from 8.30pm onwards for a chat and sharing our stories. All the NET Patient Network committee members will be there and we would love everyone to come along and say hello. In previous years this has always been a great night. 

We will arrange platters of finger food on the night. 

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NET Patient Day 2017

Excerpt from NET Newsletter – September 2017
NET Patient Day 2017
Saturday Nov 18th, 2017
The Plaza Hotel, Tallaght, Dublin
The annual NET Patient Day 2017 will be held on Saturday November 18th in The Plaza Hotel Tallaght, Dublin
(click the link for location).
https://goo.gl/Rjq1hi
The event is free and all Neuroendocrine Tumour and Carcinoid patients and their family and friends are welcome to attend.
Parking is provided free by the hotel. You can use the surface car park or the hotel’s underground car park.
Please note that this is not the same hotel as we used last year, although it is nearby. It is directly adjacent to The Square Shopping Centre. to the Luas stop in Tallaght and nearer to the M50 junction.
There will be free tea and coffee during the morning and a buffet lunch will be provided for free at the end of the day following the closing address which should be around 2pm.
As always, we expect a great attendance and we have wonderful support of NET clinicians from around the country who will attend. We are working on the timetable for the event and the invited speakers. Ms Teodora Kolorova of INCA, International Neuroendocrine Cancer Alliance will talk about unmet needs of NET patients. We expect a great Q&A session with the NET clinicians which is always of great benefit to patients and their families. We will update you closer to the event about the full event schedule and speakers.
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 – 09.00 Registration with tea/coffee
09.00 – 10.30 Talks on Irish NET information
10.30 – 11.00 Unmet Needs in NETs
11.00 – 11.30 Tea/Coffee break
11.30 – 13.30 Open Q&A with NET practitioners
13.30 – 13.40 Wrap-up and closing address
14.00 Buffet Lunch
We hope to see you all there
Saturday November 18th 2017
Be sure to let us know that you are coming!



NET Patient Network Committee Attend Official Event 

 

NET Patient Network committee attend special event to mark the awarding of the Centre of Excellence Awarded to St Vincent’s Hospital. 

Guest of Honour was Minister Simon Harris and Prof. Dermot O’Toole attended, carrying the actual Certificate of Excellence.

Included is most of the NET Patient Network committee, myself, Eoin O’Leary & Mary O’Brien and Carmel Connellan were not at the event due to health reasons.


Centre of Excellence Awarded to St Vincent’s

St Vincent’s 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.


NET Patient Network now members of INCA

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

More info here


Join Us On Facebook

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


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.