LINKS

Some Epilepsy related websites which you might find useful – are listed below. Please be cautious when searching for advice on the internet. The websites listed on our links page all have a reputation for being reliable source of information. However, BESG is not responsible for the content of external websites.

EPILEPSY CHARITIES – UK

http://www.epilepsy.org.uk 
Epilepsy Action’s – extensive website, with everything from the latest news in the medical world to a section geared towards the needs of the younger generation. There is also a forum where you can discuss matters with other people.

http://www.epilepsysociety.org.uk
Epilepsy Society – formally The National Society For Epilepsy (NSE) is a national charitiy which aims to make a lasting contribution to the treatment and understanding of epilepsy. They do this by raising awareness, undertaking medical research and by providing specialist medical services, respite, residential care, information and support.

NHS (National Health Service) UK:

http://www.nhs.uk/Conditions/Epilepsy/Pages/Questions.aspx? url=Pages/Questionstoask.aspx    
This is the National Health Service’s own site and includes a lot of professional advise. Check the tabs near the top of the page to find the type of information that you are looking for.

EPILEPSY CHARITIES & NOT-FOR-PROFITS – USA

http://www.epilepsyfoundation.org 
Epilepsy Foundation (USA) – The Epilepsy Foundation of America® is the national voluntary agency dedicated solely to the welfare of the almost 3 million people with epilepsy in the U.S. and their families. The organization works to ensure that people with seizures are able to participate in all life experiences; to improve how people with epilepsy are perceived, accepted and valued in society; and to promote research for a cure. In addition to programs conducted at the national level, epilepsy clients throughout the United States are served by 48 Epilepsy Foundation affiliates around the country.

http://www.talkaboutit.org
Talk About It! – created by actor Greg Grunberg (star of LOVE BITES, HEROES, ALIAS and FELICITY) unites Hollywood celebrities and top health care experts to end the misperceptions and misunderstanding about epilepsy and seizure disorders.

Greg Grunberg – whose eldest son has epilepsy, has dedicated his time, energy and passion to working toward ending the stigma around epilepsy and bringing public focus on the need to find a cure.

OTHER EPILEPSY CHARITIES – UK

http://www.epilepsy.org.uk 
Epilepsy Action’s – extensive website, with everything from the latest news in the medical world to a section geared towards the needs of the younger generation. There is also a forum where you can discuss matters with other people.

http://www.epilepsysociety.org.uk
Epilepsy Society – formally The National Society For Epilepsy (NSE) is a national charitiy which aims to make a lasting contribution to the treatment and understanding of epilepsy. They do this by raising awareness, undertaking medical research and by providing specialist medical services, respite, residential care, information and support.

http://www.sudep.org.uk
Epilepsy Bereaved – is the only charity in the UK dedicated to preventing sudden unexpected death in epilepsy (SUDEP) and other seizure related deaths. Core to the work of the charity is providing information and support to bereaved families, friends and carers who have lost a loved one through epilepsy.

They offer;
1)    Someone to listen
2)    a confidential service within the charity
3)    information specific to epilepsy deaths and SUDEP
4)    opportunities to meet other people bereaved by epilepsy

http://www.fable.org.uk
F.A.B.L.E – raises public awareness of epilepsy through education and publicity. Offering help, support, assistance and advice through their National Patient Support Network raising awareness about Vagus Nerve stimulation therapy, a treatment for those with epilepsy uncontrolled by medication alone. A one stop epilepsy information drop in centre stocking leaflets on alarms, education, first aid, residential homes and much more.

http://www.support-dogs.org.uk
Seizure alert dogs – Support dogs is a UK charity dedicated to improving the quality of life for people with epilepsy and people with disabilities by training dogs to act as efficient and safe assistants. The dogs are trained to assist and support their owners with their specific disability. Each dog is taught tasks tailored to his owner’s needs, enabling the disabled person to lead a fuller and more independent life.

CHILDREN AND KIDS WITH EPILEPSY

http://www.ncype.org.uk
NCYPE – The National Centre for young people with epilepsy, a national charity with over 100 years experience as a centre of expertise for all young people with epilepsy including information and education on childhood epilepsy.

http://www.thedaisygarland.org.uk
The Daisy Garland – aims to improve the quality of the life for children with difficult to control epilepsy accompanied by developmental delay. Services provided include funding for specialist dieticians (Ketogenic) within the NHS, providing support and guidance for parents and carers via the provision of a website, educational and advisory information.

http://www.matthewsfriends.org
Matthews Friends – This organisation was founded in 2001 by Emma Williams through her own experiences with her son Matthew and the successful use of the Ketogenic diet to treat his seizures.

EPILEPSY with LEARNING DIFFICULTIES

http://davidlewis.org.uk
David Lewis Centre – is the largest provider of specialist residential services for people who have complex epilepsy, learning difficulties, physical disabilities, mental health and other neurological conditions. The centre is unique in that it supports both children and adults and is open 24 hours a day 365 days of the year.

PREGNANCY AND EPILEPSY

http://www.epilepsyandpregnancy.co.uk
Epilepsy and Pregnancy Register – The aim is to find out which type of epilepsy treatment women are taking while they are pregnant and to collect information on the health of their babies after delivery.

SEIZURE TRACKER (free to use!)

http://seizuretracker.com
Seizure tracker – log and track seizure activity, appointments and medication schedules through simple calendar interface. Download printable seizure logs that correspond to the website. Reports include graphs comparing seizure activity and medication dosages.

EDUCATIONAL AND PROFESSIONAL SITES

http://www.epilepsyresearch.org.uk
Epilepsy Research UK – was formed by the merger of the Epilepsy Research Foundation and the Fund For Epilepsy on the 31st March 2007. They are the only national organisation exclusively dedicated to funding research into all areas of epilepsy.

http://www.jointepilepsycouncil.org.uk
Joint Epilepsy Council of the UK and Ireland (JEC) – is an umbrella charity providing the representative voice working for the benefit of people affected by epilepsy.

http://www.ilae-uk.org.uk
International league against epilepsy (ILAE) – represents healthcare professional and aims to promotes education and research and improve the treatment and care of people with epilepsy.

http://www.neuroeducation.org.uk
Neuroeducation – aims to highlight websites that provide the latest information on many different neurological problems. The sites are useful to many groups of people, but are particularly helpful to people with a neurological condition and their families.

OTHER ASSOCIATED ‘EPILEPSY’ CONDITIONS

http://www.hammerout.co.uk
Hammer out – this is a community site to help people learn more and get connected to other people with brain tumours and their carers in the South West of England.

NON EPILEPTIC ATTACK DISORDER

http://www.neadtrust.co.uk
NEAD Trust – is a site for people with Non epileptic attack disorder and their families.

http://www.nonepilepticattacks.info/index.html
Non-epileptic attacks  this site is designed to provide patients diagnosed with Non-epileptic attack disorder (NEAD) and their families with more information about their disorders.

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