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 [...]
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NET Patient Network launched the first part of it's 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 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. http://netpatientnetwork.ie/index.php/net-patient-network-information-videos/
The New NET Booklets from IPSEN are available to download in PDF format. We would like to thank IPSEN for producing such valuable information for Irish NET Patients. http://netpatientnetwork.ie/index.php/ipsen-net-booklets/
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. More information coming soon.
St Vincents University Hospital in Dublin 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 [...]
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
Some good News for the NET Patient Network, we are now members of INCA, the International Neuroendocrine Cancer Alliance. More details here: https://www.facebook.com/netcancerday/posts/1138073079568904
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+Hospitalemail@example.com,-8.510574,15z/data=!4m2!3m1!1s0x0:0x7ed8176dea5eafa5 The event is free and 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 [...]
A new professionally designed website has been launched by NET Patient Network to provide more medical information, particularly with an Irish focus. The new website allows us to better inform NET patients of news and events, to provide a smoother registration facility and to establish an active and helpful community of Irish NET patients.
In the UK, a wallet sized card was produced by the NET Patient Foundation for NET patients to carry on their person. The purpose of this card is to identify the holder to medical personnel as a NET patient who might suffer a carcinoid crisis in the event of having to receive emergency surgery or other treatment. The card also doubles as a “toilet card” so that patients may request use of facilities when out and about more helpful hints. NET Patient Network is considering the design of such a card for use here in Ireland. A bracelet or necklace may [...]