Did you know that Migraine and Headache disease impacts more than 37 million Americans and women are three times more likely to suffer from migraine than men? In addition to the human toll, migraine disease costs more than 200 million dollars a year in the United States in medical expenses and lost work productivity.
American Migraine Foundation
The American Migraine Foundation provides education, support, and resources for the millions of men, women, and children living with migraine. Its mission is to advance migraine research, promote patient advocacy and expand access to care for patients worldwide. Migraines and other disabling diseases that cause severe head pain impact more than 37 million people in the United States. By educating caregivers and giving patients the tools to advocate for themselves, the American Migraine Foundation has cultivated a movement that gives a collective voice to the migraine community.
Association of Migraine Disorders
The Association of Migraine Disorders (AMD) is devoted to expanding the understanding of migraine disease and its true scope. Because migraine is a full body condition with a broad spectrum of symptoms, AMD is focused on including many medical specialties in the management of this disease. The centerpiece of this effort is a comprehensive online course to accelerate the training of more medical professionals. For patients, AMD shares the opinions of experts in its series of short podcasts. AMD also believes that migraine has yet to capture the support of the general public and therefore it hosts Shades for Migraine, a playful, collaborative public awareness campaign. Finally, AMD strives to connect and grow an integrated migraine research community.
CGRP & Migraine Community
CGRP & Migraine Community is an online community provides a supportive group for people with migraine who are taking or interested in the CGRP medications (Aimovig, Ajovy, Emgality - Eptinezumab, Ubrogepant, Rimegepant, Atogepant) including evidence-based information about these medications, new research, & shared experience.
Chronic Migraine Awareness, Inc.
Chronic Migraine Awareness, Inc. is committed to being the voice of the chronic migraine community. This is accomplished by supporting, educating, and empowering people in their health journey with online peer to peer global support groups, social media campaigns, and in-person events.
Clusterbusters is dedicated to raising awareness for cluster headache. This form of Trigeminal Autonomic Cephalalgia is considered more painful than childbirth, kidney stones, and gunshot wounds. Cluster headaches are often nicknamed “suicide headaches,” and respond best to high-flow oxygen. Clusterbusters furthers cluster headache research by partnering with and advising medical professionals and innovators to develop new treatments. It educates medical professionals and the patient community in order to reduce time to diagnosis and increase access to appropriate treatments. Clusterbusters’ online and face-to-face support and education helps patients lead their best lives, and sometimes saves lives.
Coalition of Headache and Migraine Disorders (CHAMP)
The Coalition of Headache and Migraine Disorders (CHAMP) brings together the most influential patient advocacy organizations and leaders in the area of migraine, cluster and headache diseases. CHAMP enhances communication, coordination, and collaboration to more effectively fight stigma and help people achieve fair access to treatments. Our greatest strength is our members and it is a reflection of how strong people are who live with headache diseases.
Cluster Headache Support Group
The Cluster Headache Support Group is dedicated to providing a safe, supportive, community for patients and caregivers affected by cluster headache that offers patient education and access to accurate, relevant information and resources, as well as drive and support scientific research that results in treatment advances for patients with cluster headache and other TACs. It adheres to the highest standard of corporate ethics, including disclosure of any and all competing interests. Cluster Headache Support Group’s compassion for the suffering of those affected by cluster headache drives its operations. It believes in collaborative decision-making within its team, soliciting member input, and are committed to working with other headache organizations to further shared goals.
Danielle Byron Henry Migraine Foundation
The Danielle Byron Henry Migraine Foundation was established in memory of beloved daughter and sister, Danielle, who battled migraine disease for 10 years until it ultimately led to her death at the age of 17. Its mission is to increase access to care, especially for young adults and children, by educating primary care providers in the treatment of migraine. The Foundation provides support to those living with migraine through free, bi-weekly sessions of Headache School and Mindful Yoga in partnership with the University of Utah. It raises community awareness of migraine and its impact on patients, families, and society through bi-annual “Shine Her Light” events.
The Headache and Migraine Policy Forum
The mission of the Headache and Migraine Policy Forum (HMPF) is to advance public policies and practices that promote accelerated innovation and improved treatments for persons living with headache and migraine disease. HMPF uses a campaign approach to support the education of patients, healthcare providers, and other stakeholders about policy issues that impact access to new and existing therapies with the goal of furthering access to appropriate prevention and treatment options for all patients. HMPF directly advocates with plans, policymakers, and other decision-makers to expand patient access to approved therapies.
HealthyWomen is the nation's leading independent, nonprofit health information source for women. Its mission is to educate women to make informed health choices for themselves and for their families. For 30+ years, millions of women have turned to HealthyWomen for answers to their most personal health care questions. HealthyWomen provides objective, research-based health information reviewed by medical experts to ensure its accuracy. Consumers, health care providers, nonprofit and corporate partners, and the media trust HealthyWomen as a valued and reliable health information source.
International Headache Society
The International Headache Society (IHS) is the world's leading membership organisation for those with a professional commitment to helping people affected by headache. As a charity, the purpose of IHS is to advance headache science, education, and management, and promote headache awareness worldwide.
Migraine Again is a purpose-driven health media company focused on empowering patients with education and insights that help them suffer less and live more. Founded by patients, for patients in 2014, Migraine Again’s website articles, newsletter, videos, podcasts, interviews, and resources are produced by people with migraine and medically reviewed by leading headache specialists. By engaging with over 1.5 million patients each month, Migraine Again is the largest privately held independent media company for people with migraine and headache disorders in over 170 countries. Its leaders regularly advocate for patients, conduct research, interview experts and produce the Migraine World Summit, the largest event of its kind. Each year, the Summit brings together over 30 world leading experts to offer patients a breadth and depth of treatment insights that they can’t get from their local doctors. In 2018 Migraine Again added The Daily Migraine to its family of properties and is the largest social media community online.
Migraine.com inspires people living with migraine to embrace their whole selves and engage in relationships with others to build community. Migraine.com features daily, original content with shareable, customized artwork, weekly email newsletters, and community-generated content and engagement through stories, Q&A, and forums. Migraine.com can provide a bridge between patient experience and health care providers.
MigraineDisease.com is an industry leader as the only patient-owned and operated migraine website to have a medical review of all content. All content is reviewed for accuracy by a team of board-certified Migraine and Headache specialists. Doctors who treat migraine and other headache disorders can feel confident in recommending MigraineDisease.com to their patients. The website covers all aspects of living with migraine disease, including diagnosis, treatment options, lifestyle management, and behavioral health. Research is explained in clear, concise terms that everyone can understand. MigraineDisease.com is a truly comprehensive resource for migraine and headache education.
Migraine World Summit
The Migraine World Summit is the largest virtual patient event in the world for those with chronic headache and migraine disease. Its mission is to reduce the global burden of migraine through world-class education. Each year the event brings together tens of thousands of people to learn from world-leading doctors, experts, and specialists. It is complimentary for a limited time with registration and available online.
Miles for Migraine
Miles for Migraine creates live, patient-participatory events that reduce the burden of isolation and stigma for people with migraine and headache diseases and their caregivers. It builds community by bringing people together at fun walk/runs and through educational and support programs. Miles for Migraine also has programs specifically focused on engaging and supporting adolescents. Its programs foster empowerment, increase disease awareness, teach skills to advocate for better access to treatments and raise funds for headache fellowship programs.
National Headache Foundation
Founded in 1970, the National Headache Foundation is the oldest and largest foundation for patients with headache. Its mission is “To cure headache, and end its pain and suffering.” Its vision is “A World Without Headache.” The Foundation is the premier educational and informational resource for those with headache, health care providers, and the public. The work of the Foundation is through education, raising awareness, advocacy, and research. The Foundation established the Certificate of Added Qualification in Headache Medicine for physicians, nurse practitioners, physician assistants, dentists, and clinical psychologists who treat headache patients. The NHF publishes HeadWise® magazine, and NHF News to Know.
Patient Advocate Foundation
Patient Advocate Foundation provides real-time help for patients facing critical illness and debilitating disease as they encounter barriers in their healthcare. Utilizing experience from 20+ years working alongside patients, PAF is well-known for its quality educational materials that help patients self-advocate to overcome common challenges. In addition, PAF’s skilled staff deliver tangible assistance through personalized case management services, financial support towards medication copayments and the connection to vital community resources, all at no cost to the patient or their caregiver. PAF is the producer for Migraine Matters, an educational resource for persons with migraine or headache disorders.
Runnin' For Research
Runnin’ for Research strives to improve the quality of life for people with migraine and other headache disorders through raising funds for much-needed research as well as promoting patient empowerment, public awareness, and local and national advocacy. The long-term goal is that R4R will have a network of nationwide run/walk events, locally organized and run by committed volunteers. The primary focus of R4R is to promote the creation of run/walk events in communities throughout the country and empower local volunteers (physicians, nurses, migraine sufferers, and caregivers) to plan, organize, and execute these events.
U.S. Pain Foundation
The U.S. Pain Foundation is the leading advocacy organization for people with pain. Its mission is to empower, educate, connect, and advocate for individuals living with a chronic illness that causes pain, as well as their caregivers and clinicians. Through multiple programs and services, the U.S. Pain Foundation works to enhance the quality of life for people with pain, improve patient outcomes, address access and affordability issues, and increase public awareness and empathy for the issue of pain. The U.S. Pain Foundation is an independent nonprofit 501(c)(3) organization.
Patient Opinion Leaders & Blogs
The Daily Headache
The Daily Headache is a blog that candidly addresses the emotional experience of living with migraine and headache disorders and also explores coping strategies, treatments, and research. Although living with these stigmatized disorders can feel lonely and bewildering, millions of other people face similar struggles. The Daily Headache is a place where people with migraine and headache disorders come together and remind each other that none of us are facing this alone.
Golden Graine is a blog/brand created by professional patient, Katie M. Golden, to share how she lives a fulfilled life with chronic migraine and pain. Katie found a purpose in writing openly about her experiences in having to navigate an extremely misunderstood and stigmatized chronic illness.
The Migraine Diva
The mission of The Migraine Diva is to help empower and educate people living with headache, migraine disease, and mental illness through patient advocacy. Seeking valuable relationships with like-minded organizations, its goal is to share ideas, resources, and information on accessible treatments to better the lives of migraine patients and their caregivers. By sharing the realities of living with chronic intractable migraine, major depressive disorder and anxiety, The Migraine Diva hopes to empower, elevate and validate the patient voice and experience.
MigrainePal helps those with migraine get the facts with medically referenced answers. Readers can find practical and evidence-based information to empower themselves. MigrainePal was created by Carl Cincinnato who works with several charities and organizations to help lift the global burden of migraine. These include Headache Australia, the Brain Foundation, the Coalition of Headache and Migraine Patients, and the European Migraine and Headache Alliance.