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Patient and Caregiver Support

AdvoConnection Directory

www.AdvoConnection.com

A professional advocate can help you navigate your medical journey. This website, run by the Alliance of Professional Health Advocates, helps you find a private, independent advocate in the US and Canada. The services these professionals provide include advocacy, navigation, case and care management, help with decision making, help with medical billing and insurance claims, pain management and palliative care consulting, and mental health advocacy. Note there is no fee for using this website, but the advocates charge fees, which can be expensive.

American Association of Retired People

www.AARP.org

This non-profit organization is geared towards people 50 and older, but there is plenty of useful information for patients and caregivers of all ages. The health information provided includes information on conditions and treatments, caregiving tips, health care reform, alternative medicines, drug and supplements and more. Information is available on-line in Spanish.

Caregiver.com

www.Caregiver.com

800-829-2734

This for-profit company publishes Today’s Caregiver Magazine, which can either be ordered and sent to you home or received on-line for no charge. The website offers resources for caregivers including a free newsletter, on-line discussion lists, and chat rooms. They hold “Fearless Caregiver” conferences.

Caregiver Action Network

www.CaregiverAction.org

301-942-6430

This non-profit educates, supports, empowers and speaks up for caregivers. The website includes a resource guide, on-line forums for advice, peer support and advocacy.

Caregiving.com

www.Caregiving.com

This website shares insights, information and inspirations. This for-profit site offers many support tools at no charge, including monthly webinars, podcasts, live discussion groups, on-line support groups and blogs. Coaching services are available for a fee.

Caring Bridge

www.CaringBridge.org

This free website service, operated by a non-profit organization, allows patients and families to set up protected, private webpages to post health updates for keeping friends and family notified.  Visitors can leaves supportive messages.  Their SupportPlanner calendar allows you to coordinate friends and family members to help you with tasks such as meals and rides.  Multiple privacy settings allow you to determine level of access.  Site features available in Spanish as well.

Cleaning for a Reason

www.CleaningForAReason.org

This non-profit provides free professional housecleaning and maid services to improve the lives of women undergoing cancer treatment (note: this is for cancer patients only). This service is available throughout the U.S. and Canada, but not all geographical regions have participating providers. However, the coverage area is expanding as they regularly add new providers to their network.

Courageous Parents Network

www.CourageousParentsNetwork.org

This non-profit empowers and supports parents caring for children with life-threatening illnesses by providing coping tools and resources that promote family resiliency.  The organization provides expert guidance, a 24/7 community to offer validation and to lessen isolation, promotes palliative care, and works with medical providers to educate them on the specific needs of families with very ill children.

Family Caregiver Alliance

www.Caregiver.org

800-445-8106

This non-profit is an information clearinghouse for caregiver resources, respite care and professional referrals. They publish educational materials and medical updates on specific illnesses, legal issues, caregiving strategies and more. Members connect through teleconferences, workshops, seminars and retreats for dementia patients in California.

Family Caregiving 101

www.FamilyCaregiving101.org

This non-profit is a joint project between the National Alliance for Caregiving and the National Family Caregivers Association. The website provides information on how to manage caregiving, public policy issues and more. Connect with others through a message board.

HealthCare.gov

www.HealthCare.gov

This site is managed by the U.S. Department of Health and Human Services. Find health insurance information and options, learn about prevention, and find links to sites to compare hospitals, nursing homes and dialysis facilities. Information is available on-line in Spanish.

Inspire

www.Inspire.com

Share and learn from other patients and family caregivers on this free site.

Lotsa Helping Hands

www.LotsaHelpingHands.com

This free on-line service, as well as their free app, allows patients and families to connect with their friends, families and others who want to provide help.  Use their on-line calendar to organize your support network to provide help such as meals and rides.  You can manage your calendar yourself, or designate a coordinator.  Regular reminders are sent to volunteers.  Patients and families can post photos and messages that their network can view and comment on.  Other website features include an ability for members to communicate with other members.  Privacy settings allow you to control level of access.

National Alliance for Caregiving

www.Caregiving.org

This non-profit coalition of national organizations focuses on the issues of family caregiving. The website provides helpful publications, tips for caregivers and links to other useful sites.

Neighbor Brigade

www.NeighborBrigade.org

This non-profit  group organizes networks of support in local communities where neighbors are quickly mobilized to help other neighbors in time of crisis. Each chapter consists entirely of neighborhood volunteers who donate their time to provide help with tasks such as grocery shopping, meal delivery, car pooling, and light house and yard work. Chapters exist only in Massachusetts now, but the organization is looking to expand into other states.

Next Step in Care

www.NextStepInCare.org

This site is a campaign of the United Hospital Fund, a non-profit organization. The site provides guides for family caregivers and health care professionals. Although there is a focus on how to better manage and improve transitions in care (moving the patient from one location to another), many caregiving topics are covered, including ER visits, rehab, hospice and palliative care and home care. Information is available on the website in Spanish, Chinese and Russian.

Patient Advocate Foundation

www.PatientAdvocate.org

This non-profit organization provides free case management services for U.S. patients dealing with a chronic, life-threatening or debilitating diagnosis.  Help is provided on issues such as access to care, insurance, medical debt and job retention.

Patients Like Me

www.PatientsLikeMe.com

This is a free health information sharing website.  Interact with patients and family caregivers dealing with similar conditions, symptoms and treatments.   Additionally, the site collects information from users on side effects of medications and treatments which are then reviewed by a team that includes doctors.  Look up information provided from over 350,000 members regarding side effects of treatments of more than 2,500 conditions.

Ronald McDonald House

www.rmhc.org

Ronald McDonald houses provide housing and support to families when their children are in the hospital, for little or no cost. Families receive home cooked meals, stay in private bedrooms and have access to kids’ playrooms.

Smart Patients

www.SmartPatients.com

This free online community offers information about treatments and clinical trials for over 75 conditions.  You can also share your story and learn from others.

Society of Critical Care Medicine

www.MyICUCare.org

This non-profit organization’s site provides information on ICUs (Intensive Care Units) for caregivers of critically ill or injured patients.  Find information and resources designed to help you understand the ICU environment.   The site includes a glossary of terms and information on: common ICU problems, sepsis (body’s response to infection), decision making, palliative care, evaluating ICUs, safety tips, and other ICU related topics.

Strength for Caring

www.StrengthForCaring.com

This website is a project of Johnson & Johnson Consumer Products Company. The site provides updates on caregiver news, and information on a wide range of topics, such as stress relief, diet, and grieving. Join an on-line support community and sign up for a free monthly newsletter.

Therapy Dogs International

www.TDI-dog.org

This volunteer organization is dedicated to bringing dogs to nursing homes, hospitals, hospices and private homes for therapeutic visits.  The organization regulates, tests and registers therapeutic dogs and their volunteer handlers in all 50 US states and Canada.  A great way to brighten up the day of a patient.

Wellspouse Association

www.Wellspouse.org

800-838-0879

This non-profit serves the “well spouse” of the chronically ill. Members connect through on-line chat, letters, telephone networks, and a national network of support groups. They host regional respite weekends for caregivers and a national conference. Educational materials are available through their website.