IPSEN Survey
Ipsen are looking for Irish patients to take part in a survey on their use of monthly injections and their experiences with them.
The survey has been developed to better understand the patients’ injection experience with somatostatin analogues injectable treatments (Somatuline Autogel/Depot, Sandostatin LAR/Depot, or its generic).
It particularly focuses on pain at injection site and its impact on daily life.
They aim to publish the results in a peer-reviewed medical journal.
Finally, to be eligible to the survey, patients shall complete the following criteria:
Adult patients diagnosed with NET or acromegaly, currently treated with lanreotide autogel NDS or octreotide LAR (Sandostatin or generic) for at least 3 months,
The unique link for Irish patients is:
https://member.carenity.co.uk/newSurveyBymail/0/220/0/0
National NET Patient Day, Virtual Event, November 7th, 2020
An information Day for Irish NET Patients
Because this is a virtual event, you need to register to attend and you will receive a link to click on to attend the event, via email, AFTER you register.
We have written instructions that hopefully will make it easy for people to attend.
All the information is on our website and if you go to the bottom of the article there is a link to PDF file that you can download and print.
Here is the link to the virtual event.
https://netpatientnetwork.ie/net-patient-day-2020-virtual-event/
Our Latest Newsletter is out, November 2019.
It includes Photos of the day, that have been uploaded to Flickr and the Slide presentations from Rachel Crowley, Gordana Kozlovacki, Kim Winter, Caroline Miller, Deirdre Burke and Donal O’Shea can be viewed. Here is a link to the Newsletter http://bit.ly/2OuyLNk
Assessment of Lutathera for PRRT for approval in Ireland
The National Centre for Pharmacoeconomics (NCPE) in Ireland are undertaking an assessment of Lutathera for approval in Ireland which is the first step to getting PRRT (Peptide receptor radionuclide therapy) here in Ireland.
[more information on PRRT below]
This is very important for Irish NET Patients, as having PRRT available in Ireland would mean Patients do not have to travel to another country to get it.
This survey was part of the NET Patient Day events on Saturday, but we want everyone included, so here is the link for anyone that has not already done the survey.
I made it so that it takes under 2 minutes to complete, so I hope you can please take the time to do it.
Thanks
https://www.surveymonkey.com/r/2J2GL9L
More info on PRRT
https://www.cancercenter.com/treatment-options/precision-medicine/targeted-therapy/peptide-receptor-radionuclide-therapy
NET Patient Day 2019
November 9th 2019 (Saturday) is now confirmed for this years NET Patient Day. The event will be held in The Maldron Hotel in Tallaght where we held our 2016 event.
The format will be the same as in previous years.
We will have a social gathering on Friday evening. The event will start on Saturday morning with expert talks and an open-forum Q&A session to be followed by a carvery lunch. As always, the event is completely free. We just ask that you let us know you are coming by emailing [email protected]
We have arranged a special rate in the hotel at €89 for a single B&B or €99 for a double/twin B&B. 20 rooms have been reserved on a first-come first-served basis. The hotel can be contacted on 01-4685400. Mention NET Patient Network when booking to get this rate.
More details will follow later in the year on the exact format, the theme of the event and who the speakers will be. We expect a good attendance and that the event will be very useful to both newly diagnosed and longer-term patients living with the disease.
Please join our Newsletter to stay up to date.
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 [email protected] 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.
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 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).
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.