Aims & Objectives
How does it feel to be diagnosed with a Neuroendocrine Tumour?
Fearful, concerned, and perhaps a bit confused.
We understand. As patients we have experienced this, and more.
We are delighted to announce the formation of a new Foundation that we hope will help patients and their families after a diagnosis by providing essential information and support.
We are calling it the NET Patient Foundation.
The Foundation will create a new website, a magazine and key information pamphlets to promote awareness and greater understanding of this rare cancer. We are actively seeking the support of every health professional in the country with an interest in Neuroendocrine Tumours.
Around 2,000 people are diagnosed as NETs every year, and through the Foundation we aim to promote a wider knowledge of the disease amongst the general population.
The Foundation will represent the positive spirit of patients diagnosed as NETs.
Through it we hope to suggest how it is possible for many patients to live well with their disease, while at the same time providing information about the latest research and treatment developments.
Through its new publications the Foundation will be able to highlight and celebrate your fund raising efforts for the well being of all NET patients. As the NET Patient Foundation develops we hope your sense of a more positive future will grow with it.
We will attend important conferences and relay new information to patients and we will raise the profile of this cancer through campaign work.
There is much campaigning work to be done.
NETs can affect adults of all ages, and also children. Yet there is no specific information for the parents of affected children and teenagers.
The Foundation hopes to be instrumental in changing that.
Research into new treatments and also the causes is urgently needed. It is our aim to eventually find ways to fund research scientists.
Nurse specialists are few and far between yet they are vital as patient advocates and practical supporters. The Foundation wants to help fund extra nurses.
And there are challenging issues.
Some NETs patients cannot get their local health trusts or GPs to fund even the most basic monthly treatments to control the hormonal surges that some of these tumours produce. These treatments can improve a patient’s quality of life immeasurably, and research is underway into whether they may play a part in suppressing tumour growth. But the treatment is being locally denied for a proportion of patients because of funding.
Please help us in any way you can and send us your stories so we may highlight them on the site.
Best Wishes
The team at the Net Patient Foundation
