Epilepsy in Social Media

All the relevant and quality social media resources from blogs and podcasts to community sites and Twitter users focusing on epilepsy.

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Epilepsy Community Sites, FaceBook Groups and Forums

Community Sites and Forums

Epilepsy.com

Description: "Epilepsy.com is a dynamic online resource providing in-depth information and community for people living with epilepsy, and is the home of the Epilepsy Therapy Project."
Quality: "The mission of epilepsy.com is to inform and empower patients and families facing newly diagnosed epilepsy or those struggling with epilepsy that has resisted treatment."

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Epilepsy Foundation

Description: "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."
Quality: "The Epilepsy Foundation will ensure that people with seizures are able to participate in all life experiences; and will prevent, control and cure epilepsy through services, education, advocacy and research."

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Epilepsy Halton Peel

Description: "Building a community for people living with seizures."
Quality: "Epilepsy Halton Peel is dedicated to enhancing the quality of life for people living with seizure disorders through counseling and support services."

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forum4e

Description: "Forum4e is an online community for people with epilepsy."
Quality: "It's a safe and secure community, which means that only people with epilepsy, or carers of people with epilepsy who can't use a computer themselves, are allowed to join"

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PatientsLikeMe Epilepsy Community

Description: "PatientsLikeMe is committed to providing a better, more effective way to capture valuable results and share them with patients, healthcare professionals, and industry organizations that are trying to treat the disease."
Quality: "Founded in 2004 by three MIT engineers whose collective experience spans from "running the world's only non-profit biotechnology laboratory to large-scale online commerce applications, PatientsLikeMe is a privately funded company dedicated to making a difference in the lives of patients diagnosed with life-changing diseases. Our personal experiences with ALS (Lou Gehrig's disease) inspired us to create a community of patients, doctors, and organizations that inspires, informs, and empowers individuals. We're committed to providing patients with access to the tools, information, and experiences that they need to take control of their disease."

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Coping With Epilepsy

Description: "Forum for people living with epilepsy to discuss treatment options and offer peer support."
Quality: Accredited by HONcode.

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WebMD® - Epilepsy Community

Description: "Get expert insights into epilepsy and seizure disorders as well as advice from members on day-to-day living."
Quality: Accredited by HONcode.

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Epilepsy Advocate

Description: "We are a community of Advocates and caregivers that lets you connect with those who share the same goal of achieving better seizure control."
Quality: "The Epilepsy Advocate community offers a variety of ways to get more information and become better connected. You’ll find personal videos, where you can see real people tell their stories, and there are tips and insights into getting the most from your treatment."

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eHealthForum - Epilepsy Forum

Description: "Welcome to the Epilepsy Forum - a health community featuring member and doctor discussions ranging from a specific symptom to related conditions, treatment options, medication, side effects, diet, and emotional issues surrounding medical conditions."
Quality: It is accredited by HONcode.

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HealingWell - Epilepsy Forum

Description: "HealingWell.com is a thriving social network and support community for patients, caregivers, and families coping with the daily struggles of diseases, disorders and chronic illness."
Quality: Health content is contributed by reputable health organizations, including the National Institutes of Health, Mediwire and e-HealthSource.

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iMedix - Epilepsy Support Group

Description: "iMedix is a free Health community site that helps you find and share health information with patients around the world. The idea is that you can make better health decisions using information and support gained by discussing your health experiences with others."
Quality: "Discuss symptoms and treatments with real people who are experienced with Epilepsy."

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MDJunction - Epilepsy Support Group

Description: "A community of patients, family members and friends dedicated to dealing with Epilepsy, together. "
Quality: Accredited by HONcode.

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MedHelp - Epilepsy Community

Description: "The MedHelp site connects people with the leading medical experts and others who have similar experiences. Today, MedHelp empowers over 5.5 million people each month to take control over their health and find answers to their medical questions. MedHelp has over 14 years of accumulated information from doctors and other patients across hundreds of conditions."
Quality: Accredited by HONcode.

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Medpedia - Epilepsy Community

Description: "This community is for patients, providers, caregivers and others interested in learning more about Epilepsy. It is a place to come together and collaborate about all issues related to Epilepsy."
Quality: Medpedia is a medical encyclopaedia managed and edited by medical professionals.

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Revolution Health - Epilepsy Community

Description: "Revolution Health is a leading consumer-centric health company founded to transform how people approach their overall health and wellness. By putting individuals at the center of their own healthcare, Revolution Health allows them to make informed choices and offers more convenience and control over their individual healthcare decisions."
Quality: Accredited by HONcode.

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Healia - Seizures and Epilepsy Online Health Community and Support Group

Description: "Welcome to the Healia Health Community for Seizures and Epilepsy. Through this Seizures and Epilepsy support group, you can get Seizures and Epilepsy information, share experiences about Seizures and Epilepsy, connect with peers, and get answers to your Seizures and Epilepsy questions from health professionals."
Quality: Accredited by HONcode.

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Epilepsy Society

Description: "We are the leading national epilepsy medical charity working for everyone affected by epilepsy, through our cutting edge research, fundraising and awareness campaigns, and expert care."
Quality: "Our vision is a full life for everyone affected by epilepsy. We connect and support people with a whole range of charitable services."

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Inspire - Epilepsy Community

Description: An online community connecting patients with seizures, and their caregivers, family and friends.
Quality: Inspire connects patients, families, friends, caregivers and health professionals for health and wellness support. Inspire works with trusted health partners to build safe and secure health and wellness groups.

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FaceBook Groups

Facebook is a free social networking site where users can join groups. In these groups, members can post messages, interact with others or find relevant content. A few of the numerous epilepsy groups:

Epilepsy Awareness

Description and content: "This is just to help educate people about epilepsy and give support to those who have it. To inform people that having seizures doesn't mean you're "crazy" or have mental problems but that they can happen to anyone at anytime. This is also to show the people out there with it that they aren't alone."

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Kids With Epilepsy

Description and content: "This is a group mainly for parents of children with epilepsy but we also welcome teenagers and adults with Epilepsy and people who just want to know more so we cater to everyone in other words!"

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Epilepsy Support and Awareness

Description and content: "For those that live with Epilepsy or know someone that does. Feel free to post any questions or comments that you have that would be helpful to everyone."

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Epilepsy Foundation of America

Description and content: "The Epilepsy Foundation is the national voluntary agency solely dedicated to the welfare of the more than 3 million people with epilepsy in the U.S. and their families."

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Control Epilepsy

Description and content: "People with epilepsy often feel like they're the only ones who have it, but it is more common than you think. This is for anybody who has epilepsy or who knows someone that has epilepsy."

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Understanding Seizures and Epilepsy

Description and content: "A group created for the many people who have questions about epilepsy and what they really are. And for those who have epilepsy, this is a great support group that helps many to cope with living with epilepsy."

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Epilepsy Support Group

Description and content: "This is a support group for folks with epilepsy, for those with loved ones with epilepsy, or for anyone who wants more information on epilepsy."

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Epilepsy Advocate

Description and content: "Welcome to Epilepsy Advocate, a community of people living well with epilepsy, their family members, and their caregivers. Epilepsy Advocates are people just like you who have shown the courage to share their stories and provide support to others."

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Epilepsy Education

Description and content: "This goal of this group is hopefully that it will help spread awareness about a fairly common disease and help reduce the stigma associated with it."

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Epilepsy Society

Description and content: "We are the leading national epilepsy medical charity working for everyone affected by epilepsy, through our cutting edge research, fundraising and awareness campaigns, and expert care."

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