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National NET Patient Day 2022

Live Event

November 12th, 2022

 
This is a celebration of our 10th anniversary as the Net Patient Network support group.
 
Following two tough years we are now ready to meet again face to face- we hope to see you in the Plaza Hotel in Tallaght both to enjoy each other’s company on Friday evening the 11th of November 2022 at the NET dinner, (if you can) and then be ready and there for the next day’s events at our formal Patient Day (on the 12th of November) to hear about the latest developments that affect all of us.
 
We are already a group of people that look after each other, this is a chance for us to meet face to face now!
 
We really hope to see you for the meal and sociability on the Friday night, the full event and lunch on Saturday and leave you ready to head for home about 4 pm on Saturday, hopefully refreshed and renewed having had a pleasant time in the company of this really unique group of people.
 

THE VENUE

 
The recently refurbished PLAZA Hotel 24 Belgard Road, Tallaght.
 
EVENT FORMAT
11 November 2022 Patient evening and Dinner (hosted by the NPN)
This is a social evening for patients and partners or carers.
 
12 November 2022 Patient Day when the speakers will be making their helpful presentations.
 
As mentioned, this is a celebration of our 10th anniversary as the Net Patient Network support group.
There have been huge strides taken in NET care in Ireland over the last 10 years and we look forward to the plans and ideas for the next decade.
 

THE COST

Your committee have gone to great lengths to make this outstanding value in the sincere hope that we get a good crowd attending.
 
Our NET Patient Network (NPN) is contributing to the room charge to make it as affordable for our members (mindful of the times we are in)
 
The NPN is also hosting the cost of the dinners and lunches on Friday and Saturday.
This is all in the hope that as many patients as possible can attend on Friday and then stay the night so as to be ready for the next day’s events.
 
When you attend on the Friday and stay overnight it will cost a total of €99 for two people sharing a room.
 
So for only €99 two people sharing will enjoy a dinner each (at the NET Patient Network Friday night NET Dinner), a bed on Friday night each followed by breakfast, and will both have met and hopefully enjoyed the company of many others in our NET community.
 
Then on Saturday you will be able to hear about the inspiring and uplifting developments NET care that affect all of us and a lunch each on Saturday.
You can attend Saturday without attending the Friday Night event.
 
Things for NET patients in Ireland are 20 times better than they were 10 years ago , and it’s time to celebrate this progress.
We are going to use this event to enjoy each others company for a few hours and thank those who have helped along our individual roads.
 
Previous presentations at our Patient Day have ranged across topics such as new treatments, dietary considerations, travel realities for treatment abroad, how to take Creon properly and much more.
 
The talks and question and answer session has always been very helpful and very good.
We expect this year to be an excellent event. And we very much hope to see you there.
 
The NPN is subsidising the normal room cost by €50 per room booked , so to avail of this for the night of the 11th of November you will have to book your room before the 16th of October directly with the hotel on www.plazahotel.ie using the code for the Net Patient Network.
 
Make sure that AFTER you confirm the promotional code, you scroll down until you see
“Special Rate Bed & Breakfast Net Patient Event” €99 and book that rate.
 
To get the code please email [email protected] and say how many are traveling in your party.
 
Please also confirm if you can attend at the dinner on Friday night and?or the lunch on Saturday to help us get our numbers for the meals correct, we will then email you back the code to use to ensure that The NPN will pay €50 off the agreed special event room rate room charge of €149 for a double.
 
To avail of this , you will need the code when you book directly with the hotel and you will need to have booked it by the 16th of October 2022 at the latest.
 
A small point:-
The hotel has kept a few twin rooms as well as doubles and singles for us, so if say the double rooms are all booked by the time you book online ,book the available room and then send the hotel an email at [email protected] to request a change.
 

YOUR NEXT STEP

Please decide you can attend- and we hope that you can,
Then
 
Email [email protected] with the numbers for food and to get the code to book your room.
 
Then before the 16th of October next, book your night on the hotel’s website www.plazahotel.ie, using the code.
 
AFTER you confirm the promotional code, you need to scroll down until you see
“Special Rate Bed & Breakfast Net Patient Event” €99 and book that rate.
 
Then pack a bag.


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.


 
 

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.

 

 


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.