It’s no secret that I and other patients (Helen and Katia) have been helping Ipsen and their website consultants (Kanga Health) with a new site designed to support and help all Neuroendocrine Tumour patients. I’m delighted to inform you via this awareness campaign that it will launch on 10 November 2016. The site is very aptly named ‘Living with NETs’. You can have a direct involvement with this campaign too. Make your voice heard via the Ipsen campaign THUNDERCLAP (click on thunderclap).
Thunderclap is a social media system designed to release a synchronised campaign message at a specific time on a specific day, therefore enhancing and amplifying the message as it reaches hundred of thousands or (hopefully) millions of people within minutes. It only takes a minute and you can choose which social media platform to use (Facebook, Twitter, Tumbl). You can also copy and paste to any other source widening the audience even further. The ability to share your support can also help spread the campaign message and the more people who sign up for this campaign, the louder the THUNDERCLAP will be on 10 Nov. Let’s make some noise please! Let’s get the ‘social reach’ of this thunderclap into the millions on 10 Nov 2016 at 3pm CET.
I’m quite excited about this new initiative from Ipsen Group (the manufacturers of Somatuline (Lanreotide)) and not only because I feature on the site but because I sincerely believe it has the potential to be a fantastic facility for anyone interested in NETs, whether they be a patient, a carer, a health worker or anyone who wants to find out more. And it’s not just learning about NETs, it’s so much more than that. All will become clear on 10 Nov.
Those who know me best will know that I fervently believe that patient experience and patient stories are the best tools we have for awareness and this site is strong in this element. Doctors might be the experts in cancer but you’re the expert in how cancer has affected you and your stories contain valuable messages. Do you know what? I’m sensing a change in thinking, I’m sensing that more and more people and their organisations are starting to come to the conclusion that patients have a part to play in all sorts of medical areas, we are after all, the most underused people in healthcare.
On the subject of Doctors, I’m of the solid opinion that we should be working more in partnership with our Doctors whether they know about NETs or not. I’m delighted to see Ipsen using NET specialists as part of this site and you can hear them talk too!
Please add your voice! You can help get this THUNDERCLAP to millions by sharing your support.
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