Community Forum

Welcome!

Welcome to our community forums, full of support for people with epilepsy and their caregivers, including tons of advice and information on how to live a happy, healthy and productive life with epilepsy. Please register if you’d like to take part.

Directions to Register:

  1. Registered? If you haven’t registered on our site yet as a user then click the register bottom below.  Create a user name and provide your email address to register.
  2. To log in: Provide your username and password and click the log in button.
  3. And that’s it! You’re now a member of the epilepsy community and you can participate in all our discussions.
You need to log in to create posts and topics.

Epilepsy Support Groups

  1. http://www.chrissyandfriends.org/
    A non-profit organization that has support groups for children and teens with epilepsy and parents of children with epilepsy support groups in the NYC area.
  1. http://www.epilepsypenarth.ik.com
    A support group situated in South Wales, open to anyone with epilepsy to join for help and support.
  1. http://dspace.dial.pipex.com/epilepsybereaved/
    Information about SUDEP and other epilepsy deaths.  Bereavement support and information on SUDEP research.  Free booklet for young people with epilepsy.
  1. http://www.stixdesigns.com.au/epilepsy-support/index.html

Includes information, links, and articles relating to epilepsy and related topics.

  1. http://www.epilepsysupport.org.uk/
    Maintained by someone with the disease, this site offers support, advice, and useful links.
  1. http://groups.yahoo.com/group/ketogenic/
    This is a support group for parents, family members, and caregivers who are using the Ketogenic Diet as a means of control for epilepsy or seizure disorders.
  1. http://groups.yahoo.com/group/childhoodepilepsy/
    This mailing list is intended to support parents and other caregivers of children diagnosed with a form of epilepsy.
  1. http://groups.yahoo.com/group/parents-of-kids-with-epilepsy/
    This Group is for Parents of Children With Epilepsy.
  1. http://home.ease.lsoft.com/Archives/Epilepsy-L.html
    An E-mail based support group for people with epilepsy and those who care about and for them.
  1. http://groups.msn.com/laforabodydiseaseresearchtalk
    This is a site about lafora body disease it has a message board and a links page.
  1. http://groups.yahoo.com/group/Epilepsy_Advocates/
    Our group is made up of people that suffer from Epilepsy, parents of children with Epilepsy, people whom have previously had Epilepsy and friends of those suffering from Epilepsy.
  1. http://groups.yahoo.com/group/epilepsy/
    For people with or know someone with Epilepsy.  A place to talk, share stories, and for moral support.  All ages welcome.
  1. http://groups.yahoo.com/group/epilepsy-kids/
    Epilepsy-Kids offers support and information for parents of children diagnosed with any form of epilepsy.
  1. http://groups.yahoo.com/group/KuekidsAustralia/
    The Kuekids Australia mailing list is to help parents, families, and friends of children using the ketogenic diet who may also have food intolerance problems.
  1. http://www.healthboards.com/epilepsy/
    Healthboards.com message board for information and support on epilepsy.
  1. http://www.orgsites.com/mn/epilepsy
    A guided independent living experience designed to prepare adults diagnosed to live and work on their own.  Includes services, history, gallery, opportunities, and FAQs.
  1. http://www.users.bigpond.com/epilepsysupportgroup/Default.htm
    Offers information, events, issues, links, and contact details.
  1. http://www.cymepilepsysbytygwyn.co.uk/
    Epilepsy Support Group in Wales, UK.
  1. http://au.groups.yahoo.com/group/australian_epilepsy_group/
    Yahoo! Group for giving support and sharing information.
  1. http://www.debraboard.org/cgi-bin/temp.pl
    A forum for people affected by this disorder.
  1. http://s4.invisionfree.com/VNS_Message_Board/index.php
    A message board designed for information exchanged related to the Vagus Nerve Stimulator.
  1. http://groups.yahoo.com/group/Christian-Epilepsy-Support/
    Christian oriented support for people with Epilepsy or family and friends of people with Epilepsy.
  1. http://groups.yahoo.com/group/Dating-and-Married-Life-with-Epilepsy/
    Made for people to discuss issues that come up when they are dating and married, including handling different situations, embarrassment, children, and fear.
  1. http://www.pokwe.org.uk
    A support web site for a parent is of children with Epilepsy.  Conversations via our mailing lists and web content.  This group was designed by parents for parents.
  2. http://groups.yahoo.com/group/epilepsycircle/
    This support group is for all who have an interest in epilepsy, whether it is for you, a family member, a friend, pupil, or a child that has a seizure disorder or epilepsy.
  1. http://groups.yahoo.com/group/adultswithepilepsy/
    This club is for adults (those 18 and older) to discuss their experiences with epilepsy, including causes, treatment and coping skills.
  2. http://groups.yahoo.com/clubs/epilepsysupportgroup
    Supportive club to help those with this disease.  Includes free membership, message boards, and chat room.  Also joining instructions.
  1. http://www.esgs.org.uk
    Offers an extensive FAQ's and a section talking about the different drugs to control epilepsy.
  1. http://www.wsm.inuk.com/epilepsy.htm
    Provides information about coping with this disease, seizures, and convulsions. Details about the various types, and provides free help and advice using its email and telephone helplines.
  1. http://www.geocities.com/epilepsy911
    Providing worldwide support for people with epilepsy.  Includes FAQ's, links, support groups, and a pen pal site.
  1. http://groups.yahoo.com/group/ChristianEpilepsyPrayerGroup/
    Are you a Christian living with or caring for someone with epilepsy?
  1. http://groups.yahoo.com/group/seizurealertdogs/
    This group unites people who benefit from seizure alert or assistance dogs as well as people with epilepsy who benefit from a dog's companionship.  We also Welcome people who want to learn more about these wonderful dogs.
  1. http://groups.msn.com/doosesyndrome
    This is a group about dose and it has links to other websites but almost all information can be seen by non-members of the group.
  1. http://groups.yahoo.com/group/EpilepsySurgeryGroup/
    We deal with those who have had brain surgery, Vagus Nerve Stimulator surgery, and Gamma Knife Radiosurgery.  Our members are here to help answer any questions you may have.  All are welcome, whether you are a surgery candidate or not.
  1. http://groups.yahoo.com/group/real_epilepsy/
    A group based in Indiana.  Epilepsy and seizure disorder resources and support.
  1. http://groups.yahoo.com/group/RareEpilepsySyndromes/
    Rare epilepsy is very difficult for all families involved.  This group has been made to help educate and support these families.  Rare epilepsy's included.  ESES/CSWS, LKS, LGS, Begnign Rolandic, and any other hard to recognize epilepsy.
  1. http://groups.yahoo.com/group/epilepsychat/
    A Place For Chat, Info, Support And To Have Fun
  1. http://www.pokweuk.org
    A UK based supporting website containing epilepsy information, children's stories, and a forum for parents of children with this disorder.
  1. http://groups.yahoo.com/group/TLE/
    Discussion of temporal lobe epilepsy and/or partial complex seizure disorder.  For sufferers and friends/family of sufferers.
  1. http://beehive.thisisessex.co.uk/epilepsy
    Local branches of a national organization providing support, advice, and information on living with epilepsy
  1. http://health.groups.yahoo.com/group/doosesyndrome/
    For parents of children who have Doose Syndrome rare, severe, intractable epilepsy of early childhood.  Group provides support for parents along with insight into the management of this disorder.
  1. http://groups.yahoo.com/clubs/epilepsy_surgery
    Details about this group which is for those who have thought of (or had) having brain surgery or Vagus Nerve Stimulator surgery.  Registration required.
  1. http://groups.yahoo.com/group/worldofepilepsy/
    For people around the globe who have epilepsy and would like to share their recent or previous experience with epilepsy.
  2. http://groups.yahoo.com/group/wivesofmenwithepilepsy/
    It is the hope of this club to address problems, offer support, and encouragement to the wife whose husband has epilepsy.
  1. http://community.healingwell.com/community/?f=23
    Message boards and chat dedicated to sharing information, offering support, and coping strategies to manage this disorder.  Community moderated by volunteers.
  1. http://groups.yahoo.com/group/epilepsycured/
    We are people sharing information on curing/preventing epilepsy - seizures.  This is a support group for patients, parents, children, family members ... anyone and everyone.
  1. http://groups.yahoo.com/group/doosesyndrome/
    For parents of children who have, or who may have Myoclonic-Astatic Epilepsy, otherwise known as Doose Syndrome, a rare, severe, intractable epilepsy of early childhood.
  1. http://dir.groups.yahoo.com/dir/Health___Wellness/Support/Diseases_and_Conditions/Epilepsy?
  1. http://groups.yahoo.com/group/epilepsysupportandeducation/
    We are a growing community to help bring people with epilepsy from all corners of the world to share experiences, thoughts, and provide information.  All ages are welcome and you do not have to be epileptic to join.
  1. http://groups.yahoo.com/group/lennox-gsibs/
    Lennox Gastaut is a severe form of Epilepsy.  This group is for the siblings (brothers & sisters) of those affected by LGS, or a seizure disorder.
  1. http://groups.yahoo.com/group/epilepsysupport4kids/
    This group is a support group for kids with epilepsy, kids interested in improving their condition by natural means.
  1. http://groups.yahoo.com/group/ToddlerswEpilepsy/
    This is a group for parents with toddlers that have Epilepsy.  Parents with infants are welcome too.
  1. http://neuro-mancer.mgh.harvard.edu/cgi-bin/forumdisplay.cgi?action=topics&forum=Epilepsy&number=33