It’s no secret that I and other patients (see picture below) have been helping Ipsen Group and their website consultants (Kanga Health) with a new site designed to support and help all Neuroendocrine Tumour patients. It was subsequently launched on NET Cancer Day 2016 and is very aptly named ‘Living with NETs‘. Very pleased to see all this hard work recognised at the 2018 Eye for Pharma awards for the Most Valuable Patient Initiative. And, this is great awareness for Neuroendocrine Cancer at a major pharma event.
I’m also delighted to be speaking alongside Ipsen as the EyeforPharma Patients Summit event in London on Oct 16th 2018.
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. It’s also international and they are rolling out language by language over time (as at 13 Mar 2018, it’s available in English, German and Portuguese).
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. Check out my series of Living with NETs videos available on the site – click here
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. 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. There doesn’t seem to be any point in beating them up because they don’t know enough about NETs. Let’s help educate them instead!
Check out the site HERE
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Reblogged this on sharlarblog and commented:
Great post from Ronny! Add your voice to the Ipsen Thunderclap campaign!
I am sure it will be very very good, and if it is of course I will share it widely, but don’t know that till I see it.
As I said, you’re not endorsing the site in carrying out this action.
Can we see the site? Cant endorse something I haven’t seen.
The site will not be live until 10 Nov as per the blog. You’re not really endorsing the site per se – don’t think the word endorse was mentioned, neither was it inferred. Ipsen is a tried and tested supporter of the Neuroendocrine community and they enlisted the help of patients (including me) with general advice and supplied some patient stories to get the site up and running (others will have an opportunity to input once live). The Thunderclap links to NET Cancer Day for general awareness so you are technically supporting NET Cancer Day and all that means to patients and the Neuroendocrine community