Patient Journey – Useful websites
Cancer BACKUP
3 Bath Place
Rivington Street
London EC2A 3JR
Tel: 0808 800 1234 Fax: 020 7696 9002
Website: www.cancerbackup.org.uk
Macmillan Cancer Relief
89 Albert Embankment
London SE1 7UQ
Helpline: 0808 808 2020
Tel: 020 7840 7840 Fax: 020 7840 7841
Website: www.macmillan.org.uk
NHS Direct
Tel: 0845 4647
Website: www.nhsdirect.nhs.uk
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
CNETS Canada
Why a Zebra?
In medical school, doctors are taught “when hearing hoofbeats, think horses, not zebras.” Carcinoid Cancer & Neuroendocrine Tumors has been thought of as ‘rare’ and therefore may be considered a zebra. With greater awareness and quicker diagnosis, it is being shown that Carcinoid Cancer & Neuroendocrine tumors is not as rare as was thought a few years ago! Carcinoid Cancer Awareness Network
Website: www.wayfoundation.org.uk
A.M.E.N.D
The AMEND website is committed to supporting patients with Multiple Endocrine Neoplasia and associated growths, their families and friends. The Association for Multiple Endocrine Neoplasia Disorders is a UK registered charity (no. 1099796). Click on any of the buttons to explore the site and learn more about M.E.N. and the work of the patient support group, AMEND.
The website has been created by MEN patients to help provide a comprehensive resource for patients and medics throughout the world.
The information in this website will go some way to making your choices easier to understand and therefore possibly easier to make during a lifetime of living with MEN.
Website: 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.
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.
David John Wade – Australian Support Group
