Many of the websites listed below may have information that is not necessarily specific to disorders of consciousness (DoC), but helpful to guide you in areas of need for all people who have a disability or are aging.
Family Caregiver Alliance
Family Caregiver Alliance (FCA) seeks to improve the quality of life for caregivers through education, services, research, and advocacy. Through its National Center on Caregiving, FCA offers information on current social, public policy, and caregiving issues and provides assistance in the development of public and private programs for caregivers, as well as a toll-free call center for family caregivers and professionals nationwide.
The services, education programs, and resources from FCA are designed with caregivers’ needs in mind and offer support, tailored information, and tools to manage the challenges of caregiving.
National Center on Caregiving
Phone: (415) 434-3388 | (800) 445-8106
Website: https://www.caregiver.org/
Email: info@caregiver.org
FCA Care Journey: https://www.caregiver.org/carejourney
Family Care Navigator: https://www.caregiver.org/family-care-navigator
Next Step in Care
These guides are for all caregivers and include information on becoming a caregiver, doctor’s visits, your personal health record, medication management, ER visits, advanced directives, hospice and palliative care, care coordination, DNR, and withdrawal of care. Also, there are resource guides for hospital stays and discharge planning options, rehabilitation, and home care.
Website: https://www.nextstepincare.org
Caregiver Action Network
This resource includes tips for caregivers, a family caregiver toolbox, doctor’s visits, checklists, and lots of resources and descriptions on financial planning, options, benefits, etc.
Website: https://www.caregiveraction.org
Brain Injury Association of America (BIAA)
The Brain Injury Association of America (BIAA) is the country’s oldest and largest nationwide brain injury advocacy organization. The National Brain Injury Information Center is also associated with the BIAA. The BIAA is dedicated to advocacy, education, and research on brain injury to bring hope and healing to the individuals with brain injury, their families, and the professionals who work with them.
Brain Injury Association of America
1608 Spring Hill Road, Suite 110
Vienna, VA 22182
Phone: (703) 761-0750
Fax: (703) 761-075
Website: https://www.biausa.org
Brain Injury Alliance
This is also a brain injury advocacy organization that is available in some states. Their mission is to engage the community in preventing brain injuries and improving lives.
Brain Injury Alliance
P.O Box 1804
Alexandra, VA 22313
Phone: 703-960-6500
Website: https://www.usbia.org
Brain Trauma Foundation
The Brain Trauma Foundation (BTF) is focused on developing best practice guidelines, conducting clinical research, and educating medical professionals, patients, and their caregivers. BFT is dedicated to increasing awareness and understanding of brain injury and treating the immediate and ongoing difficulties associated.
Brain Trauma Foundation
7 World Trade Center
250 Greenwich Street
34th Floor
New York, NY 10017
E-mail: education@braintrauma.org
Phone: (212) 772-0608
Fax: (212) 772-0357
Website: https://www.braintrauma.org
BrainLine
BrainLine is a national multimedia project offering authoritative information and support to anyone whose life has been affected by brain injury or PTSD: people with brain injuries, their family and friends, and the professionals who work with them. BrainLine also provides military-specific information and resources on traumatic brain injury (TBI) and post-traumatic stress disorder (PTSD) to veterans, service members, and their families. Through BrainLine, we seek to provide a sense of community, a place where people who care about brain injury can go 24 hours a day for information, support, and ideas. BrainLine is a national service of WETA-TV, the flagship PBS station in Washington, D.C.
BrainLine
3939 Campbell Avenue
Arlington, VA 22206
Phone: (703) 998.2020
E-mail: info@BrainLine.org
Website: https://www.brainline.org
American Stroke Association
This is an organization that offers a lot of information about stroke. It will also help you understand life after stroke.
Stroke Family Warmline (M-F, 8AM-5PM CST): 1-888-4-STROKE or 1-888-478-7653
Website: https://www.stroke.org
National Rehabilitation Information Center (NARIC)
The National Rehabilitation Information Center (NARIC) website has easy-to-find information on organizations, agencies, reports, internet resources, and research projects.
National Rehabilitation Information Center (NARIC)
8201 Corporate Drive, Suite 600
Landover, MD 20785
E-mail: naricinfo@heitechservices.com
Phone: (301) 459-5900 or (301) 459-5984
TTY: 800-346-2742
Fax: (301) 562-2401
Website: https://www.naric.com
USA.gov
The official website of the United States Government, www.usa.gov – offers information on government and elected officials, health issues, housing and community, travel and immigration, money, and shopping.
Phone: 1-844-872-4681
Website: https://www.usa.gov