Welcome to the Net club
One of our NET Patients has compiled a great resource to help newly diagnosed NET patients with practical tips and advice, drawn from their own personal experiences.
You can download the PDF document by clicking here.
National NET Patient Day
November 13th, 2021
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.
Survey to Help Raise Awareness for
NET Patient Day and World NET Cancer Day
The survey has been developed to better understand current awareness of NETs, and your experience of living with the condition. Ipsen aim to publish key findings from the survey in the Irish media in order to increase awareness ahead of World NET Cancer Day on November 10th and the National NET Patient Day on November 13th.
ENETS-INCA NET Cancer Day Educational Webinar
NOTE: We have edited the times below to reflect Irish Time, however the webinar is being held using Central European Time (CET), which is one hour ahead of Irish Time & CET times will be mentioned during the webinar, NOT Irish Time.
11:00 – 11::10 | OPENING
11:10 – 11:40 | PART ONE |
11:10 – 11:20 Talk
11:20 – 11:40 Q+A session
12:40 – 13:10 | PART TWO |
11:40 – 11:50 Talk
11:50 – 12:10 Q+A session
12:10 – 12:40 | PART THREE |
12:10 – 12:20 Talk
12:20 – 12:40 Q+A session
12:40 – 13:10 | PART FOUR |
13:10 – 13:15 | CLOSING
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.
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.
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.