At times epilepsy can be difficult to cope with and reaching out for support can be really helpful.
Below is a list (created with the help of our followers) of epilepsy charities, helplines and support services.
Epilepsy Action: The largest member-led epilepsy organisation in Britain.
Vision: ‘We want all people affected by epilepsy to receive the healthcare and support they need and the
public respect, fairness and understanding they deserve.’
Mission: ‘To fight to improve the lives of everyone affected by epilepsy.’
Epilepsy Action have a helpline (0808 800 5050) which can be contacted at set times Monday to Saturday which can offer advice and information about epilepsy from trained advisors. They also have an email (email@example.com) and texting (0753 741 0044) service if this is preferable.
For connecting with others who have Epilepsy, Epilepsy Action have several local branches and coffee and chat groups, as well as an online forum.
Epilepsy Action have lots of additional leaflets, booklets and learning resources too.
For further information about the support Epilepsy Action offer, see here: https://www.epilepsy.org.uk/info/support/helpline
Epilepsy Scotland: Epilepsy charity based in Scotland.
Mission: ‘Epilepsy Scotland works with people living with epilepsy to ensure that their voice is heard.’
Epilepsy Scotland have a freephone helpline (0808 800 2200), helpline email (firstname.lastname@example.org) and helpline text (07786 209 501). For full information see here: http://www.epilepsyscotland.org.uk/telephone-text-email-or-social-media/info_20.html
Epilepsy Scotland also have several support groups across Scotland. For further information about a support group near you, see here: http://www.epilepsyscotland.org.uk/support-group-details/info_50.html
Epilepsy Society: UK based charity and provider of epilepsy services.
‘Our vision is a full life for everyone affected by epilepsy’. For more on their vision and mission statement,
Epilepsy Society have a helpline (01494 601 400), for more information see here: https://www.epilepsysociety.org.uk/contact-us#.XHju0i2cY6g
Epilepsy Society also have plenty of information about finding support from those around you, your healthcare team, others with epilepsy, professional psychological support, practical and financial support and self-management courses. For more information, see here: https://www.epilepsysociety.org.uk/finding-support#.XHjvxC2cY6h
SUDEP Action: UK charity specialised in supporting and involving people bereaved by epilepsy.
‘Making every epilepsy death count.’
‘At SUDEP Action, we focus our efforts on the priorities that bereaved families tell us are important: To prevent deaths; to be supported and to be involved.’
Support line: 01235 772852. For more information, see here: https://sudep.org/contact-us
Young Epilepsy: UK charity dedicated to creating better lives for children and young people
with epilepsy and related conditions.
See vision, mission and values here: https://www.youngepilepsy.org.uk/about-us/what-we-do/our-vision-mission-and-values.html
Young Epilepsy have a helpline (01342 831342) which is open Monday to Friday 9am-1pm. They also have an email helpline (email@example.com).
Young Epilepsy provides a range of support and information for parents, children, young people and training for professionals.
For more information about Young Epilepsy, visit their website here: https://www.youngepilepsy.org.uk
Outside of the UK
Australia and New Zealand:
Epilepsy Action Australia: ‘Providing support, information and innovative services to those living with
and affected by epilepsy across Australia.’
Further, for more information about the services and resources which Epilepsy Action Australia offer, see here: https://www.epilepsy.org.au/how-we-can-help/our-services/
Epilepsy New Zealand: ‘The National Epilepsy Association of New Zealand.’
Helpline (0800 37 45 47).
For information about their seminars and support groups, see here: http://epilepsy.org.nz/seminars-and-support-groups
US and Canada:
Epilepsy Foundation: ‘A national non-profit with more than 50 local organizations throughout
the United States.’
The Epilepsy Foundation Foundation works to ensure that people with seizures have the opportunity to live their lives to their fullest potential and offer a huge range of services. Website: https://www.epilepsy.com
For information on their support and helpline services, see here: https://www.epilepsy.com/living-epilepsy/247-helpline
To search for your local Epilepsy Foundation, see here: https://www.epilepsy.com/affiliates
Epilepsy Canada: ‘A registered Canadian charity dedicated to positively affecting the lives of those
living with epilepsy.’
Contact information: http://www.epilepsy.ca/contact.html
Epilepsy Ontario: ‘Promoting independence and optimal quality of life for children and adults living
with seizure disorders.’
Offer resources and support or people affected by epilepsy in the province Ontario.
Contact information: http://epilepsyontario.org/contact-us/
If you know of any other charities, helplines or support services which could be added to this list, please get in touch at firstname.lastname@example.org