Living with NETs – a patients included award winning site

livingwithnets ronny story

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.

eye for pharma

I’m also delighted to be speaking alongside Ipsen as the EyeforPharma Patients Summit event in London on Oct 16th 2018.

eyeforpharma ronny and isabelle

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).

living with nets home

me and paul allen
Working with Kanga and Ipsen to design the site

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

Doctors might be the experts in your condition

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!

living with nets patient stories

 patient is the most underused person in healthcare

Check out the site HERE

Thanks for reading


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Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

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