Useful Links
Macmillan Cancer Relief
89 Albert Embankment
London SE1 7UQ
Helpline: 0808 808 0000
Tel: 020 7840 7840 Fax: 020 7840 7841
Website: www.macmillan.org.uk
NHS Direct
Tel: 0845 4647
Website: www.nhsdirect.nhs.uk
Counselling Directory
Website: http://www.counselling-directory.org.uk/
World NET Alliance
The Carcinoid Cancer Foundation (USA)
333 Mamaroneck Avenue # 492
White Plains
NY 10605 USA
Helpline:+ 1 888 722 3132 or + 1 914 683 1001
Fax: + 1 914 683 0183
Website: www.carcinoid.org
Grace Goldstein, from the Carcinoid Cancer Foundation, produces a wonderful blog, which can be found at http://carcinoid.wordpress.com/category/carcinoid-awareness/
CNETS Canada
Way Foundation
Website: www.wayfoundation.org.uk
A.M.E.N.D
AMEND supports all those affected by multiple endocrine neoplasia (MEN) disorders and associated endocrine growths, providing worldwide email and telephone support, a UK registry and patient information produced with the help of an expert medical advisory team. Membership is free and open to all via our website at www.amend.org.uk
Nutrition in Cancer
There is a new website that has been launched to raise awareness of nutrition in cancer. It has been linked with the rarer cancer forum and is being sponsored by Nutricia. Log on and get your free DVD from the rarer cancers forum about cancer nutrition, and there is also a nutritional starter pack available on prescription that Nutricia have produced.
Susan Anderson
A Carcinoid patient and awareness advocate who has maintained a personal website to provide information and support for the Carcinoid community since 1996.
Royal Free Hospital Neuroendocrine Clinic
The aim of the Royal Free Hospital neuroendocrine tumour group is to provide optimal management for patients with neuroendocrine tumours, taking into account how the tumour affects each individual. We work within a multidisciplinary team and aim to enhance the prospects for treatment by a combination of clinical and laboratory research.
Introduction to Neuroendocrine Tumours (NETs)
Definition, classification and diagnosis by Dr Martyn Caplin, Royal Free Hospital. Click next abstract to read more NET related research.
Endobible
Mike Broad has been working with Dr Francesca Swords, a consultant endocrinologist in Norwich, to develop an online guide to endocrine diagnosis.
The site is designed to help junior doctors to take very full histories, and make very thorough assessments, as well as to unify and clarify patient pathways.
Endobible also includes management overviews on all common endocrinology conditions, links to latest guidelines (NICE, SFE, AACE etc), and detailed investigation protocols as used by Norwich’s CIU. It’s a free to access site, and should be relevant for consultants, trainees, GPs and specialist nurses and patients who would like to know more about the management of their condition.
Von Hippel Lindau online community
http://www.rarediseasecommunities.org/en/community/von-hippel-lindau
Insulinoma UK
A website for patients with insulinomas.
North American Net Tumour Advisor
Video clips & frequently asked questions, this site provides the basic information on NETs. It covers the basics you need to understand these rare, slow-growing tumors.
www.netumoradvisor.com
Carpa
A Swedish based organisation founded in 1991 by patients and health professionals at the University Hospital Uppsalap. The Website includes resources in both English and Swedish
Northern Cancer Network Freeman Hospital
Newcastle upon Tyne. Answers questions for newly diagnosed patients
National Cancer Institute
An in depth medical site
North American Alliance of Patients with Neuroendocrine Tumors
NAAPNET is the brainchild of Dr. Eugene Woltering of Louisiana State University in New Orleans.
It was formed at his request in September of 2004. Its primary purpose is to support the support groups, to facilitate educational events (including our annual conference, typically held in September of each year in the US), and to offer networking and educational opportunities.