Our ECA Connections service is designed to create an "Online Epilepsy Phone book" (per say) for people wanting to find out about other Services, Organisations, Sources of information and more relating to Epilepsy. We review all of our referred groups to find out what they offer, then place links and descriptions of them so people can more effectively find the support that they need.
In comparison - our registered "ECA Connections" are ones we have an active relationship with - offering services like free online support - including page spread and online traffic features, web support for sites & online campaigns, links from our various social media formats, plus we regularly run stories about the great work being achieved by our Connections to spread awareness and help gain attention to great causes.
If you are looking for a specific service, information or worthy cause - then check our our ECA Connections!
(To apply to become an ECA Connection please fill out the request form on the "Promotional service" page or you can get in touch with ECA directly via Facebook or Skype - direct emails can also be sent to "firstname.lastname@example.org".)
Note: not all listed links are registered ECA Connections, many are referrals only with no direct contact with ECA - we refer them based on client feedback and general good reputation - but we review ALL of our links regardless to make sure they are beneficial to the Epilepsy community and run correctly. If people have any issues with a listed site / group we encourage them to contact us immediately as we have stringent review / complaint process in place. Any group that does not wish to be listed can apply for immediate removal.
ECA's service connections are groups that provide support services (online & in other formats) to the people and those around them who are suffering from Epilepsy - and would like assistance. We list a broad range of Connections based in different area's all over the world, and focused on all kinds of topics: medication, parenting, depression, loved ones, work, driving and all kinds of specific needs. The idea is you can find a service much more specific to your individual needs - and vice-versa if you run a service, then we can help you Connect with a more targeted audience.
Kiserem Epilepsy Foundation:
Based in Africa, the Kiserem Epilepsy Foundation was established in 2016 and works tirelessly to improve awareness and conditions for those living with Epilepsy. It's founder - Fred Kiserem - is a passionate campaigner for improved conditions and research into Epilepsy based causes and has worked with numerous international bodies - including the UN - on fundraising and other campaigns. Fred Kiserem and his team often do lifesaving work and was one of our own Founder's personal inspirations when starting ECA.
Writer: Lowel G Evans
Lowell G Evans is the writer of the popular book "The Village" in which a man who is diagnosed with Epilepsy has his community rally around him to support him in his battle with Epilepsy and inequality. Lowell himself is also an avid supporter of numerous Epilepsy support campaigns and foundations, based in Virginia in the USA. A great connection who is plugged into numerous causes across the USA on top of his own great writing.
Epilepsy Support Group:
This group was started by tellmenow.com as a discussion forum for people living with Epilepsy. With over 4,000 members and an active admin team, it is a safe and supportive group to join where people can chat with others from around the world about their experiences and get advice on topics relating to Epilepsy. Much like ECA, this is a peer support based service and not run by medical staff - but the size of the member base allows for a great amount of input from a varying community worldwide with diverse experiences.
Epilepsy Seizure Awareness Support Group:
This group was started by Epilepsy Seizure Awareness to create a support environment for those living with Epilepsy but also with a focus on supporting family, friends and loved ones who also have to deal with the follow on effects of Epilepsy and how it effects all those around. With close to 7,500 members over a worldwide base this is another of ECA's recommended connections as the active admin team, caring membership base and wide ranging experiences of those members make this a great place to get advice on Epilepsy and how it effects us in the real world, especially if you're only just coming to terms with new diagnosis.
Jenifer Epilepsy Page:
This group was started by Jenifer Ann living in Western Australia - she has been a lifelong supporter of Epilepsy causes and now runs her own support page for those living with Epilepsy and to promote other worthy causes too. Jenifer Ann has a very personal approach to supporting those with Epilepsy and has an open forum, inviting the public to contact her for assistance with support relating to Epilepsy.
"EPILEPSY" facebook support group:
With over 12,500 members the "EPILEPSY" Facebook support group is one of the largest online discussion formats currently available. Their member base includes people from all over the world and there is often very valuable discussions on complex topics such as specific medications and direct seizure types. Again - one of the advantages of such a large member base is access to so many different experiences and sources of information. Our founder has been a member of this group even before ECA was founded and has found it to be a supportive and caring group, well worth a look especially if you are looking to find more specific information.
Aslek: Epilepsy Foundation for the Democratic Republic od Congo:
As it's name suggests, this group is based in support for people with Epilepsy living in the D. R. of Congo, Africa.. There are often specific factors that have to be dealt with in African nations that people in the Western World often don't even realise. Lack of social Awareness and prevalence of Epilepsy myths such as being able to "catch" Epilepsy from someone experiencing a Seizure and Epilepsy being related to evil religious myths - plus more. Then there is a lack of access to medical care such as certain medications and treatments, and the problems related to large portions of the population living in rural areas. Dr Princo Kazadi and his team to an amazing job supporting Epilepsy in one of the most difficult places in the world to do so.
(Page quote) "We are here to educate the public using factual information regarding epilepsy. It could be for your friends, family, employers, the media - and maybe even you! Don’t be afraid. Lack of knowledge induces fear and we are here to turn that around. We are here to educate, make those affected by epilepsy feel less alone and even laugh upon occasion! Friendly, funny and factual comments are more than welcome. 📷😀We have a global following on our blog: www.epilepsysparks.com. Check us out.
Note: Friendly, funny and factual comments are welcome. We do not however accept any comments or claims regarding celestial beings. As with the websites and blogs of other professional organisations, we do not accept any comments or claims that are negatively discriminatory, inaccurate or that could encourage negative feelings within others.
Comments about self-harm and/or suicide can encourage others to harm themselves and so will be removed. Those making these comments will be warned by an Admin and should it occur again, will be blocked from the page.
We are not Epileptologists or Neurologists and so any information that we provide or which you perceive to be as advice, should not be acted up until/if you gain approval from your Epileptomologist or Neurologist.
Let's talk and laugh when possible!!
The Epilepsy Shield Project
(Page quote) "The Epilepsy Shield Project was started in 2015, the goal of this project is to spread awareness of and information about epilepsy with use of my artwork I know that the colors of some of the paintings maybe too bright for some people with photosensitive epilepsy and I am sorry for that. My goal is to use the colorful imagery to attract attention because people do not read shirts and other items with one color writing nearly as often as shirts with bright colors that catch the eye, creating awareness. Each series of paintings has a different theme for the paintings and the subject of the paintings range from very educational to just funny. The pictures and post from the page can be freely shared to help spread awareness.
The paintings are available on T-Shirts and coffee mugs under the “Shop Now” button at the top of the page from the purchase price 40% will go to an epilepsy organization which if not specified in the items description will be the Epilepsy Foundation of America, the project get a 10% commission to help cover its expenses and the other 50% goes to Sunfrog the printing company, so a $25.00 sell would be split $10.00 / $2.50 / $12.50.
Thank you, Chris Arceneaux"
Epilepsy Chit Chat: humour group 18+
(Page quote) "THIS IS NOT A SERIOUS EPILEPSY GROUP. Before requesting to join, read the entire group description below, as this group may not be for you. This group is NOT for you if... * You don't have a sense of humour about your epilepsy. * You are easily offended at jokes, sarcasm and other dark humour. * You cant respect other peoples opinions during a debate. * You wish to discuss alternative treatments that are illegal in the UK. * You are looking for serious support. * You aren't willing to participate in the group. * You are under 18 years of age.
This group IS about... * 100% support to Epileptics and carers, but in a light hearted fashion. * Zero tolerance to bullying, drama queens and attention seekers. * Offering members a place to chill out and have banter with each other. * Supporting debates but not arguments as they can escalate. * Proving that Epilepsy does not have to consume your life. We laugh in the face of Epilepsy and it's associated issues, as we believe laughter is the best medicine. We are very direct with this approach and a strong sense of humour is needed. You could say its offensive. Members give us feedback and don't want a place where people confront, complain and are self absorbed as it brings the atmosphere down to the same as any other group. There are some great support groups on the internet but operate totally differently to we do, they may suit you better if this is not the group for you. Full group rules in files section, updated May 2015."
Seizures with a Sense of Humour: humour group 18+
We are here because we have seizures, and need a place to laugh at ourselves. Just a bunch of spazzes having a laugh. Rules: 1) No direct attacks at people. That is all. If you are offended please leave, we are not interested in your butt hurt. **By the ways, please feel free to share serious support here too. We may make jokes, (especially when it's most serious) but we are all just trying to find a smile. We are just all here to try and support each other, through love, through humor, through any damn means necessary. No one should fight this alone. Love and Laughter to all!!! Keep Scrolling Rule *Amendment 1 to "No Attacks": "No Attacking" refers to attacks on specific people or specific groups. Additionally, If in any way your statement is considered challenging, condescending or argumentative it may be considered hostile & it's advised against. IF YOU SEE A POST YOU DISAGREE WITH, DO NOT COMMENT ON IT. MOVE ON. Don't take someone else's feelings as a personal attack. If a member is not attacking a specific person or group of persons, they are just venting and they are welcome to do so without your criticism.
Vimpat Support & Discussion group:
Many Epilepsy based support groups are for those on specific types of medications. Medications for Epilepsy can vary greatly both in effectiveness and side effects, so many groups are based around discussions on those specific medications. Vimpat is one of the new(er) medications curretly in use for seizure treatments but is often somewhat intimidating to new patients as not as much is known about the side effects simply due to less discussion compared to other more common medications. This group addresses that issue by providing a supportive environment where people can ask others who have had experience with Vimpat enquiries and for advice.
Keppra Support Group:
Like the Vimpat group - this forum is based around support and discussion for those on the medication "Keppra" (or Levetiracetam). Keppra has been one of the very effective medications used in seizure control for serious and prolonged Epilepsy since it's introduction - however the side effects are often a point of debate, and can vary greatly depending on patients. The emotional effects are well documented with this medication, with mood swings and anger issue often experienced - commonly referred to in the community as "Kepprage" - along with a variety of physical side effects. This group is a great place to gain understanding into many of the effects people on this drug may experience as well as discussions on other medications used in combination.
Epilepsy/Seizure Support & Discussion:
Another one of the largest online discussion groups worldwide - with close to 30,000 members - this group is a great place to ask questions to a wide variety of people. The group discusses all aspects of Epilepsy - from seizures, to medication, to living with loved ones who have Epilepsy and more. The group has very active admins and puts a lot of focus on peoples privacy and that members are respectful and caring to one another. This is a great place to both join discussions or to post your own questions and start discussions yourself.
"Epilepsy Seizure Support" group:
Based in the US, this is another of ECA's recommended connections due to the caring client base (of over 5,000) and the open nature of the group. It has an experienced an active admin team who are quick to respond to member enquiries. We have found this group to be very good on enquiries relating to US medical laws and insurance enquiries along with all other topics which it is very open to.
The "Purple Lions" group:
Page Quote - "This Group is for all Awareness for all conditions not illnesses, from Autism, Downs syndrome, Multiple sclerosis, Lupus, cerebral palsy, a.d.h.d. Epilepsy, asthma and many more. It's the only group I know of to help with any and all conditions, run by Group leader Jason Hughes, + 16 Awesome Admins." Based in the UK, its Founder Jason Hughes is an avid advocate for numerous disabilities and works tirelessly on numerous campaigns. A great place for our UK followers to check out (along with the rest of the world!)
The Epilepsy Network - "TEN":
Page Quote - "Founded by empowered husband and wife team, Chris and Tiffany Kairos in 2011 after the sudden and unexpected seizure car crash that Tiffany experienced in 2008, The Epilepsy Network (TEN)'s mission is to provide awareness, education and support to each person affected by epilepsy.
The organisation's essential mission is to provide better epilepsy awareness and education to the world! To continually seek out a cure and rise above the hardships faced with epilepsy. Whether you’re a medical professional, fighter, caregiver or supporter, we can share in the same journey together. In the beginning of The Epilepsy Network (TEN) founder Tiffany Kairos stated the message not only to herself but to the world, "Don’t let epilepsy defeat you, let it inspire you!"
Purple Warrior Wellness:
Page Quote - "This a group for those who are dealing with epilepsy share what they do to face epilepsy. It can be through exercise, a hobby, anything that helps you deal with the physical, emotional, and mental pain that epilepsy can bring on. We are here as purple warriors to help encourage one another and help one another deal with having epilepsy." - this group runs regular discussions for it's members to take part in and find information and support.
Page Quote - "This is a support group for individuals who have epilepsy or have a loved one with epilepsy. My name is Natalie and I have had epilepsy for 37 years now. Even though I have been seizure free for many years, I still face many challenges due to epilepsy. My goal is for this support group to become a strong support system for the epilepsy community. We all face different challenges due to epilepsy and need to be here for one another. We all come from different backgrounds and have different experiences due to having epilepsy. Please show your love and support for everyone who is a member of this group. We are here to help one another, not judge one another. Epilepsy can have many negative effects on someone's life and the goal is for us to all come together and not allow epilepsy to overtake us. Please feel free to post any events, research articles, or anything important regarding epilepsy to our page. This is not my group, but this is for all of us. Please feel free to reach out to me and I am happy to help in any way that I can. Let's do all we can to be a great community and not allow epilepsy to control our lives. Kind regards, Natalie Aswad Boehm Administrator.
Epilepsy Foundation India:
(Quote) "Epilepsy Foundation India is a non-profitable charitable organization dedicated towards the welfare of the millions of people suffering with epilepsy in the India and their families. Founded by Dr. Nirmal Surya in 2009, as a result of his passion, determination and efforts to help the less fortunate patients in Mumbai, Maharashtra; the initiative has over the last few years grown to a national scale. Our team is constantly striving to ensure epilepsy patients participate in all walks of life. We work to improve how people with epilepsy are perceived, accepted and valued in society and to promote research for a cure.
Our foundation conducts Free Epilepsy diagnosis and treatment Clinics and camps under Dr. Surya’s leadership at various places in Maharashtra, Gujarat, Rajasthan and Madhya Pradesh, where the patients were identified and subsequently treated free of charge."
Epilepsy Support Group online:
Here you will find a group of many with one thing in common: Epilepsy. We are a support group and friendly to all. Come here to talk about your day, your latest experience, even how listening to the birds chirp outside your window brings a smile, or that your favorite sports team making it to the finals is making your day. We love to talk about each others success stories! We're also here to help each other through the complexities our lives have developed (in large part, due to Epilepsy) However, there are a few ground rules we all need to know. We are not medically trained professionals. We are just like you! Anything that appears to be medical advice is stemming from our experiences. None of us should ever tell another that a diagnosis is wrong or that his/her own personal regime is better than another's. In fact, suggesting any changes to a medical regime (including, and definitely not limited to "take this medicine instead of that one because this one is terrible" or "there is no need to depend on pharmaceuticals because this remedy is better") is NEVER ALLOWED. if you're considering any changes in your current medical regime, discuss them with your neurologist. Advising other members to totally change their currently prescribed meds will get you booted.
Epilepsy Awareness Group:
Epilepsy Awareness Group purposes & rules are: Increase public and professional awareness of epilepsy as a universal and treatable brain disorder; Raise epilepsy to a new plane of acceptability in the public domain; Promote public and professional education about epilepsy; Identify the needs of people with epilepsy at the national and regional levels, and Encourage governments and departments of health to address the needs of people with epilepsy including awareness, education, diagnosis, treatment, care, services and prevention. *No Solicitation, Selling or Asking for Funds of any kind. Violators will be warned and in some cases banned the first time your post is seen. *No digital graphical images. (that would impair or be harmful to someone with photosensitive epilepsy). They will be deleted and member will be warned if continuously posting such images. Repeated violators will be removed and banned. *No harassing, bullying, putting down, foul language is to be used. Immediate removal and banned will occur. *No medical advice to be given; only advice to be given from your own personal experience or supplied from factual websites. This group is not responsible for any medical advice given by anyone in this group. *No adding another member yourself without admin approval. Message one of the admin first for approval.
ECA's Organisational Connections include entities such as Charities, Foundations, Corporations and Media that are currently providing active support for the Epilepsy community. They may be fundraising, performing research, helping with Awareness and informational Campaigns, helping within their community or online - and more. Many of our Organisational Connections are performing worthy causes you can donate to or volunteer for, and you might find places in your community to support or seek support from. We also take submissions from the public on worthy Organisations they think we should provide Connections to.
The E?!LEPSY Centre:
Page Quote: "To improve in all respects the welfare of people living with epilepsy and their families in South Australia and The Northern Territory. Our Objectives are:
• To educate the public to accept persons with epilepsy as equal citizens and encourage greater public understanding.
• To remove any discrimination from persons with epilepsy and/or their families.
• To advise and help persons with epilepsy, and their families.
• To represent persons with epilepsy in being accepted with education authorities and all employer organisations.
• To promote and provide information on epilepsy by way of pamphlets, advertising, films, articles, discussion and lectures to public and professional groups and the community.
• To support research programmes and seminars into medical and social aspects of epilepsy."
ECA fully supports the great work of E?!LEPSY Centre as both a fighter for awareness and social / legal equality based issues, plus as a tireless warrior for medical research to support Epilepsy and one day find a cure. A worthy cause no matter where you live worldwide.
Austin Health Neurological research:
Page Quote: "Austin Life Sciences (ALS) brings together over 800 innovative researchers at Austin Health’s vibrant research precinct who are turning science into health. It includes Hospital and University of Melbourne Departments and Independent Institutes:
The multidisciplinary alliance consists of world class scientific leaders conducting research in: Cancer, Neurosciences, Transplantation including xenotransplantation, Heart disease, hypertension, Immunology, Infectious Diseases and Microbiology, Endocrinology, Sleep disorders, Improving the well being of people living with spinal cord injury".
Not only is this one of the world leading hospitals in Neurological and Epilepsy research, it's wide ranging field base covers many related topics and links to valuable and informative research articles."
The Austin is a world leader is both independent and collaborative research into fields of Neurosciences directly impacting Epilepsy that ECA is proud to support.
The "Epilepsy Society" UK:
Page Quote: "More than half a million people in the UK have epilepsy and one third have seizures that cannot be controlled through available anti-epileptic drugs. There are 1,000 deaths from the condition every year, including many children and young adults. Epilepsy can have a devastating effect on people and their families, affecting all aspects of their lives.
Epilepsy Society is the UK’s leading provider of epilepsy services. Through our cutting edge research, awareness campaigns, information resources and expert care, we work for everyone affected by epilepsy in the UK.
Our research is driven by the desire to understand what has caused the epilepsy in each individual person, to be able to identify the best therapy from the outset, and to make this expertise widely available."
Epilepsy Connections UK:
Page Quote "Epilepsy Connections was formed in April 2000 to provide information and support to people with epilepsy. It is a company limited by guarantee and registered in Scotland. It is also recognised as a Scottish Charity.
The charity’s principal objectives were, and continue to be:
Developing and delivering a range of community-based information and support services to people with epilepsy, their families, friends and carers and the professionals who work with them.
Raising awareness of the diversity and complexity of epilepsy needs and working with statutory, voluntary and independent agencies to address those needs.
Involving epilepsy service users in the processes of planning and delivering services and in the monitoriing and evaluation of those services."
The Epilepsy Foundation (USA):
Page Quote "The Epilepsy Foundation, a national non-profit with over 50 local organisations throughout the United States, has led the fight against seizures since 1968. We are an unwavering ally for individuals and families impacted by epilepsy and seizures. We work to prevent, control, and cure epilepsy through community services, public education, federal and local advocacy, and supporting research into new treatments and therapies. We work to ensure that people with seizures have the opportunity to live their lives to their fullest potential.Epilepsy Connections was formed in April 2000 to provide information and support to people with epilepsy."
ECA gets many good reviews about the great work done by The Epilepsy Foundation both within the US and worldwide. We also note that it's page has a VERY WIDE RANGING LINK BASE TO NUMEROUS SERVICES / TOPICS so is a great base point for people to find out information.
The Epilepsy Foundation Australia:
Page Quote: "Welcome to the Epilepsy Foundation. If you are a person living with epilepsy, an educator, health professional, someone looking to volunteer or donate – you will find resources on this website to help you understand epilepsy and the impact it has on individuals and families. We work with individuals and families, organisations and the community to increase people’s understanding of epilepsy.
The Epilepsy Foundation uses evidence based practice to stop avoidable deaths, ensure children get a good education, help people get and keep their jobs and help people feel safe and connected. A good understanding of epilepsy is the key to achieving these outcomes. The Epilepsy Foundation believes no one should go it alone with epilepsy."
Medical Cannabis Research Australia (MCRA):
Page Quote: "Medical Cannabis Research Australia was established in December 2016 by Paul and Sharlene Mavor and Tony Hume. Paul Mavor is a pharmacist and has practiced for over 26 years in WA and owned a number of pharmacies. He has an interest in the pharmacokinetics of different cannabis dosage forms. Sharlene Mavor is a medical scientist with majors in Microbiology, Virology and Biotechnology. She has worked in a number of laboratories both in Western Australia and in the UK. Sharlene has a particular interest in different cannabis strains, potency and purity testing and extraction methods.
Tony Hume is an experienced fund raiser and has a diverse background in education, health and philanthropy. He is a graduate of the Australian Institute of Company Director’s course and is accredited as a Certified Fundraising Executive (CFRE) world-wide. Tony also is an Independent Director for the Yinhawangka people in the Eastern Pilbara region. He is passionate about positive community impact and making connections in the community to maximise peoples’ opportunities.
Medical Cannabis Research Australia is committed to improve the lives of Australian persons and families by reducing the suffering, prevalence and impact of a variety of diseases through the use of medical cannabis. This will be achieved with a focus on clinical trials and ethical supply of medical cannabis. Research will be conducted to support and promote public awareness for the use of medical cannabis including education for clinical practitioners with new treatment options, both locally and globally for their patients. We aim to educate and advise health professionals, patients, their families and carers in the use of medical cannabis through media, education and fund raising campaigns and further cooperate with government and likeminded organisations in order to advance the research, treatments, equity and quality of life which can be assisted with the use of medical cannabis."
We get many enquiries at ECA related to new treatments in the CBD based pharmaceutical field, and MCRA has some of the most up to date information and is a world leader in this field - one of the top places to seek information on this topic.
Living Well with Epilepsy:
Living Well with Epilepsy is an online Awareness group based purely on Epilepsy related topics. They are an interactive media group - that has been recommended to ECA by numerous members of the public - who report and take submissions from the Epilepsy community to create stories for awareness campaigns and other worthy causes. You can read real life stories from people around the world and submit your very own stories to the group to help people understand what you personally have been through.
Surge Laboratories - Pakistan:
Surge Laboratories is an active research based pharmaceutical company with a strong basis in Neurological research (often supporting the Neurological Society of Pakistan) and has become a world leader in both research and production. They have a vast library of medical posts relating to many medications often used in neurological treatment and also regularly post live forums from medical professionals and researchers on current trials and possible new treatments. Our CEO regularly attends online forums from research professionals on new medical treatments being developed for Neurological purposes. (ECA notes this is a more technical site best suited to our Medical Connections as opposed to the general public).
Epifinder Online (Epilepsy App):
Epifinder is a great new tool that can be utilised by both Patients AND doctors to keep track of medical symptoms for Epilepsy. We all know that it is difficult t recall all of one's symptoms in detail once every few months at your Neurological appointment - Epifinder offers an online tool that connected doctors and patients into an online portal - meaning your specialist / your patient gets information stored that can be immediately updated when any new symptoms occur and accessed at any time. Then, when the patient / doctor appointment occurs - every symptom has been listed so the specialist can preemptively review all of the symptoms in far more detail - creating a far more productive and detailed patient review that leads to overall better patient care.
MJN NeuroSciences (Spain)
MJN Neurosciences is a South American science, research and engineering company developing high-technology innovative devices to predict epileptic seizures. They develop a complete seizure detection and warning system for people with epilepsy. The result is a non-intrusive device to predict and warn epilepsy seizures. 30% of people suffering epilepsy are considered pharamacoresistant (medicines can not control all seizures). Seizures come by surprise so there’s high risk of accidents. Seizure prediction technology exists but with big and unwearable technologies.
(Page Quote) "We are developing a non-intrusive wearable device that let people with epilepsy do any casual activity knowing that the device will warn when a seizure is to come so they can take all the safety measures to avoid any accident. It used EEG (electroencephalogram) monitoring and AI (artificial intelligence) software. By registering brain activity with EEG we can predict when seizures are to come with an AI software." (End Quote).