Meningioma UK maintains links with other brain tumour organisations including Cancer 52 (for rare tumours), and the Cancer Campaigning Group, The Brain Tumour Charity, IBTA (International Brain Tumour Alliance), and AMNET the Acoustic Neuroma network. We are actively involved in advocating more research funding and better care for all brain tumour patients and carers.
Useful UK websites
A well-established national support group for cancer patients.
Acoustic Neuroma and Meningioma Network (AMNET)
Eastern counties self-help and support group of former and new patients and carers based in Addenbrooke’s Hospital, Cambridge.
Contact: Alison Frank 01953 860692
Brain Tumour Action (BTA)
Scottish group that meets in Edinburgh, Glasgow and Aberdeen. It provides information, education days and lectures. Excellent guide to understanding brain tumours and brain structures.
Fundraising group for children and young people affected by a brain tumour or brain disease in East Anglia. Well-organised site with lots of information, links and fundraising news.
British Epilepsy Association aims to improve quality of life, promotes interests of people living with epilepsy. Information, advice, equal opportunities. A valuable and user-friendly site.
Rest of the world
Australian website for Melbourne University Hospital and Medical Faculty recommended by Clare Holtham for the quality and clarity of the information:
Meningioma Support and Information
Comprehensive US website for support and information. Almost too much to read. A site to browse. Includes some good links.
American 24/7 online support group “bringing hope, friendship and laughter to all those affected by a meningioma brain tumour”
Al Musella’s website
A magnificently comprehensive and important source of information on all types of brain tumours and on up-to-date treatment information, current research and trials.
Brain Tumor Foundation of Canada
Funds brain tumour research, provides patient and family support services, and educates the public. Excellent, well-written site with lots of useful information and graphics. Easy to navigate.
Cord Blood Center
Umbilical cord blood has helped children survive over 80 diseases including neuroblastoma, leukaemia, lymphoma, and anaemia and is now being used in older patients. The Cord Blood Center wish to help others understand how they can benefit and help save the lives of sick children in need.
NB – information on the web is unregulated. This means that, although there is good information, there is also a lot of misleading and possibly unnecessarily frightening material out there. Watch out too for the snake oil merchants and other ‘miracle’ cures. They want your money – Don’t get ripped off!