awarded as Most valuable patient initiative by Eyeforpharma Awards 2018* is a dedicated website for patients living with neuroendocrine tumors that was designed with patients, for patients.

Nearly 900 patient questionnaires across the globe were collected to assess the needs and wants for patients living with NETs to help create this website. For patients from the pre-diagnosis stage right up to living long term with the illness, this disease awareness website has been created for patients and designed with them. During the creation of the website, there were workshops conducted with patients to understand their everyday life living with NETS and the final project was validated with patients and doctors incorporating their feedback before launch.

The result is a patient-focused intuitively organized searchable online ‘hub’ that addresses the wide range of needs identified: from helping to drive earlier diagnosis, to comprehensive disease area information through to a wide range of support and tools on a more practical level.

Since the launch on world NET day in 2016, the site has enjoyed 120,000 unique visits and 300,000 pageviews. There were 80,000 views on the YouTube channel on patients sharing their perspective of their everyday lives with the disease. The website has also been rolled out locally in Germany and Brazil and it is in final validation stages for four more countries, with many more to follow.

The website was nominated as one of the five European finalists for the prestigious Eye For Pharma ‘Most Valuable Patient Initiative’ award. The NET team and Kanga (the digital agency) defended the project in front of an expert jury in Barcelona then were notified of their winning position on the 13th of March, during the conference.

It is an honor to receive the Award of “Most valuable patient initiative” for This is a recognition of Ipsen’s patient centered-mindset and commitment to concrete actions to improve patient outcomes. Thank you to all NET patients who helped us make this project a success.

Isabelle Bocher-Pianka – Chief Patient Affairs Officer

For Ronnie Allan, patient who has taken part in the project and features on the website:

The LivingWithNETs website has taken a very innovative approach to patient support with both patient experience and professional medical perspective including some powerful patient videos. Furthermore, it has been designed to be quickly expandable to cater for changes in medical best practices and for further patient input including stories and tips for others. I have not seen a NET patient site which has such a wide spectrum of support areas and it would also be a very useful tool for anyone interested in learning about Neuroendocrine Tumors and how patients cope. It also doubles up as a great NET awareness tool complementing the work of INCA.


For more information, please visit:

If you have any concerns about NET Cancer, please speak to a healthcare professional.
*LivingWithNETs is intended for an international audience, excluding the United States, Canada and France.

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