An uncommon and relatively unknown disease

Neuroendocrine tumors (NETs) are most commonly found in the gastrointestinal tract. Sometimes asymptomatic, they can secrete abnormally high amounts of hormones that affect body functions and can cause digestive system problems, weight loss and flushing (redness of the skin and hot flushes). Neuroendocrine tumors (NETs) are rare, with 2 to 5 new cases per 100,000 people per year. They occur more frequently in older than in younger people. The average age at the time of diagnosis is about 65, and they affect men and women equally

 

A clear lack of information

The 900 questionnaires collected across the globe showed remarkably consistent findings with patients in general being poorly served, content often being hard to find with very limited, generic information and little interactivity. Ipsen decided to invite patients to participate in a workshop to help design a resource which would fit their needs : from contents, to look and feel, even giving input to the name of the website.

 

LivingWithNETs.com is a new dedicated website for patients living with neuroendocrine tumours that was designed with patients, for patients.

 

A patient-focused hub that addresses a wide range of needs

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.

 

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 Tumours and how patients cope. It also doubles up as a great NET awareness tool complementing the work of INCA.

 

For more information, please visit : www.livingwithnets.com

 

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 and France.