The Internet is an invaluable source of information. These links can connect you with helpful resources. We are constantly researching new sources of information and other web sites relating to our mission. Below you will find links to information on (click on topic):

Advance Directives
ALS - Amyotrophic Lateral Sclerosis ("Lou Gehrig's disease")
Grief and Bereavement Support
Healthcare
Hospice Resources

E-mail Encryption Systems
Health Insurance Portability and Accountability Act (HIPAA)
Health Information Technology (HIT)
Patient Data Vault (PDV)

Complementary and Alternative Medicine (CAM)
Everflowing - Training in Touch Techniques

Caregiver self-care

Children's Cancer Support Organizations
Children's Healthcare
Children's Hospice
Family Support for the Loss of a Child
Grief and Bereavement Support
Volunteer Programs Supporting Families - Hannah's Friends

Hospice Education & Spiritual Care
Professional Hospice Organizations

http://www.uslivingwillregistry.com/ - The U.S. Living Will Registry is a privately held organization that electronically stores advance directives, organ donor information and emergency contact information, and makes them available to health care providers across the country 24 hours a day through an automated system. Preparing an advance directive involves more than simply filling out a form. The time you spend thinking about the kind of care you want, or don't want, and discussing your wishes with your family and loved ones is much more meaningful than simply checking off boxes on a form. The written document is a good way to memorialize and record your thoughts and choices, but it is no substitute for time spent discussing those choices with your loved ones.

http://www.choicesbank.org - The Choices Bank, the first community-based repository to make advance directives available anytime. This is a free community service. There is no charge for depositing your advance directive, viewing it, printing it, or for depositing revised versions of it.

http://www.alsa.org/ - The ALS Association (ALSA) is the only national not-for-profit health organization dedicated solely to the fight against ALS. ALSA covers all the bases - research, patient and community services, public education, and advocacy - in providing help and hope to those facing the disease. The mission of The ALS Association (ALSA) is to find a cure for and improve living with amyotrophic lateral sclerosis..

http://www.extrahands.org/ - Extra Hands for ALS is a national voluntary service charity assisting people with ALS, also called Lou Gehrig's disease. Extra Hands is expanding nationally and now operates in many cities in the United States. Through Extra Hands for ALS, high school and college students volunteer to help people with ALS and their families by doing chores and errands or just providing company for the homebound. Students also organize and participate in ALS public awareness events designed to teach their peers and communities about the disease.

http://opentohope.com/ - the Open To Hope Foundation was created to help those who have suffered a loss to cope with their pain and find hope for the future. This site has a wealth of information on grief, including a radio show hosted by Dr. Gloria Horsley, the Founder and President of the Board for the Open to Hope Foundation and an internationally known grief expert, psychotherapist, and bereaved parent.

http://compassionatefriends.org/ - the Compassionate Friends organization assists families toward the positive resolution of grief following the death of a child of any age and to provide information to help others be supportive. Compassionate Friends is a national nonprofit, self-help support organization that offers friendship, understanding, and hope to bereaved parents, grandparents and siblings. There is no religious affiliation and there are no membership dues or fees.

http://www.grief-recovery.com/index.html - the Grief Recovery Institute is an internationally recognized authority that provides programs for The Compassionate Friends, The National SIDS Foundation, The National AIDS Network, The University of California at Irvine, Chapman University, and many others. This site includes books and articles that are very helpful to those who have just experienced the death of a loved one.

http://www.sachealthdecisions.org - Sacramento Healthcare Decisions is an organization focusing on educating the public on end-of-life issues.

http://www.caringinfo.org/i4a/pages/index.cfm?pageid=1 - Partnership for Caring: America's Voices for the Dying is a national nonprofit organization that partners individuals and organizations in a powerful collaboration to improve how people die in our society. Among other services, Partnership for Caring operates the only national crisis and information hotline dealing with end-of-life issues and provides state-specific living wills and medical powers of attorney.

http://www.growthhouse.org/hospice.html - this is an excellent source of information on a variety of topics provided by Growth House.

http://www.lifes-end.org/ - The Missoula Demonstration Project, now known as Life's End Institute (LEI) , is an innovative community project that is working to improve how people experience dying, caregiving, death, and bereavement. This site provides resources for those who wish to work toward the improvement of end-of-life care. LEI has helped over 200 communities nationwide in their own efforts to improve end-of-life care.

http://www.threadthat.com/ - ThreadThat provides tools and resources that will enable you to experience HIPAA-compliant communications with the highest possible level of reliable, anonymous, secure, private and confidential e-mail communications. This service encrypts all text and associated attachments for a completely secure communication.

http://www.hhs.gov/ocr/privacy/hipaa - the HIPAA Privacy Rule establishes national standards to protect individuals’ medical records and other personal health information and applies to health plans, health care clearinghouses, and those health care providers that conduct certain health care transactions electronically. The Rule requires appropriate safeguards to protect the privacy of personal health information, and sets limits and conditions on the uses and disclosures that may be made of such information without patient authorization. The Rule also gives patients rights over their health information, including rights to examine and obtain a copy of their health records, and to request corrections.

http://healthit.hhs.gov/ - the Health Information Technology for Economic and Clinical Health (HITECH) Act provides a mandate to the Centers for Medicare & Medicaid Services (CMS) to provide a reimbursement incentive for physician and hospital providers who are successful in becoming “meaningful users” of an electronic health record (EHR). These incentive payments begin in 2011 and gradually phase down. Starting in 2015, providers are expected to have adopted and be actively utilizing an EHR in compliance with the “meaningful use” definition or they will be subject to financial penalties under Medicare. The (HITECH) Act seeks to improve patient care and make it patient-centric through the creation of a secure, interoperable nationwide health information network. A key premise is that information should follow the patient, and artificial obstacles -- technical, bureaucratic, or business-related -- should not be a barrier to the seamless exchange of information. Therefore, secure information exchange needs to occur across institutional and business boundaries so that the appropriate information is available to improve coordination, efficiency, and quality of care. The HITECH grants are specifically designed to work together to provide the necessary assistance and technical support to providers, enable coordination and alignment within and among states, establish connectivity to the public health community in case of emergencies, and assure the workforce is properly trained and equipped to be meaningful users of EHRs.

http://www.hospicevolunteerassociation.org/pdvAbout - the Patient Data Vault (PDV) is a hospice volunteer management tool that provides a secure place to electronically store and retrieve patient data over the Internet using security measures that comply with the requirements of the HIPAA Security Rule. The PDV includes a complete form library that will satisfy all the needs you may have for volunteer communications. All data that is stored in the PDV is encrypted and can only be accessed by the hospice that reposited the data. The greatest benefit of the PDV is that it permits volunteer coordinators and volunteers to efficiently communicate patient data between themselves and other hospice staff in manner that meets all of the stringent requirements mandated by HIPAA Privacy rules.

http://nccam.nih.gov/ - the National Center for Complementary and Alternative Medicine (NCCAM) is the Federal Government's lead agency for scientific research on complementary and alternative medicine (CAM). They are one of the 27 institutes and centers that make up the National Institutes of Health (NIH) within the U.S. Department of Health and Human Services. NCCAM sponsors and conducts research using scientific methods and advanced technologies to study CAM. CAM is a group of diverse medical and health care systems, practices, and products that are not presently considered to be part of conventional medicine.

http://www.everflowing.org/ - Everflowing, founded by Irene Smith, is an educational outreach program dedicated to teaching specific touch skills as an intergral component to end-of-life care. The Everflowing training program provides educational resources and training to bodyworkers, healthcare professionals and hospice volunteers.

http://www.sterlingheart.com - an excellent source of self-care resources for caregivers dealing with stress and compassion fatigue. In addition to healing and relaxing music, self-care books, gifts, and workshops, the site includes inspiring stories and helpful links to hospice and healthcare organizations.

http://www.hopeforcancerkids.org/ - the Children's Cancer Community (CCC), a collaborating partner on Hannah's Friends, has provided emotional & financial support to children diagnosed with cancer and their families in the North Bay area of Northern California for over 10 years. All services are provided at no cost to the children with cancer and their families. CCC regularly awards Memorial Scholarships to cancer survivors and their siblings and holds three monthly family support in the North Bay.

http://www.childrenshospitals.net - the National Association of Chidlren's Hospitals and Related Institutions (NACHRI) promotes the health and well-being of children and their families through support of children's hospitals and health systems that are committed to excellence in providing health care to children. It does so through education, research, health promotion and advocacy. On this site you may search for children's hospitals by geographic region, programs, services, research, and more.

http://www.childrensoncologygroup.org/ - the Children's Oncology Group is a National Cancer Institute-supported clinical trials cooperative group devoted exclusively to childhood and adolescent cancer research. Their mission is to cure and prevent childhood and adolescent cancer through scientific discovery and compassionate care.

http://www.hopkinschildrens.org/ - the Johns Hopkins Children's Center offers one of the most comprehensive pediatric medical programs in the country, from performing emergency trauma surgery, to finding causes of and treatments for childhood cancers, to delivering a child’s good bill of health. The Harriet Lane Compassionate Care Program at the Johns Hopkins Children's Center provides palliative care, the comprehensive management of the physical, psychological, social and spiritual needs of children with life-limiting conditions and their families.

http://www.hospicecc.org/ProgramsServices/ComfortforKids - the Comfort for Kids program provides comprehensive, in-home healthcare and support for San Francisco Bay Area children with life-limiting illnesses. With ten years of experience, Comfort for Kids is respected as a leader in providing pediatric palliative and hospice care in Northern California.

http://www.chionline.org/ - the Children's Hospice International (CHI), a non-profit organization, was founded in 1983 to promote hospice support through pediatric care facilities; to encourage the inclusion of children in existing and developing hospice, palliative, and home care programs; and to include the hospice perspectives in all areas of pediatric care, education, and the public arena. CHI provides education, training and technical assistance to those who care for children with life-threatening conditions and their families.

http://www.georgemark.org/ - the George Mark Children's House is the first freestanding children's respite and end of life care facility in the United States. The House, located in San Leandro, California, offers respite support (round-the-clock), transitional care, and end of life care for children with life limiting or terminal illnesses. All care is informed by the principles of palliative care. Additional support services are available to all family members. Services are provided regardless of a family's ability to pay.

http://www.attitudinalhealing.org - the International Center for Attitudinal Healing helps people support one another to overcome conflict, fear and feelings of isolation that can accompany a life crisis, and encourages a choice of peace and love. They offer a variety of services such as giving emotional and spiritual support to family members of a life-threatened person, visiting people who are confined to their homes or the hospital because of an illness, and offering loss and grief support.

http://www.thefamilylink.com - the Family Link is is a nonprofit guest house for families who are visiting people with aids or other life threatening illnesses in the San Francisco area.

http://compassionatefriends.org/ - the Compassionate Friends organization assists families toward the positive resolution of grief following the death of a child of any age and to provide information to help others be supportive. Compassionate Friends is a national nonprofit, self-help support organization that offers friendship, understanding, and hope to bereaved parents, grandparents and siblings. There is no religious affiliation and there are no membership dues or fees.

http://opentohope.com/ - the Open To Hope Foundation was created to help those who have suffered a loss to cope with their pain and find hope for the future. This site has a wealth of information on grief, including a radio show hosted by Dr. Gloria Horsley, the Founder and President of the Board for the Open to Hope Foundation and an internationally known grief expert, psychotherapist, and bereaved parent.

http://www.grief-recovery.com/index.html - the Grief Recovery Institute is an internationally recognized authority that provides programs for The Compassionate Friends, The National SIDS Foundation, The National AIDS Network, The University of California at Irvine, Chapman University, and many others. This site includes books and articles that are very helpful to those who have just experienced the death of a loved one.

http://nccam.nih.gov/ - the National Center for Complementary and Alternative Medicine (NCCAM) is the Federal Government's lead agency for scientific research on complementary and alternative medicine (CAM). They are one of the 27 institutes and centers that make up the National Institutes of Health (NIH) within the U.S. Department of Health and Human Services. NCCAM sponsors and conducts research using scientific methods and advanced technologies to study CAM. CAM is a group of diverse medical and health care systems, practices, and products that are not presently considered to be part of conventional medicine.

http://www.hannahsfriends.org - Hannah's Friends volunteers are compassionate individuals from a family's local community who are specially trained to serve the unique yet wide-ranging needs of families that are coping with a child’s life-threatening illness. Our volunteer force is comprised of individuals from a variety of disciplines, from young adults to a core team of healthcare professionals skilled in dealing with the multitude of issues families may face on their journey of caring for a child with a life-threatening illness.

http://mettainstitute.org/index.html - The Metta Institute is a new organization and outgrowth of the Zen Hospice Project (ZHP), nationally recognized as an innovative model in the movement to improve end-of life care. The Director, Frank Ostaseski helped form ZHP in 1987 and guided the program for 17 years. Currently, Metta's primary program is The End-of-Life Care Practitioner Program, first developed in 2002 as a project of ZHP's Institute on Dying. The goal of this innovative training is to establish a national network of educators, advocates and guides for those facing life-threatening illness and the individuals and systems that serve them.

http://www.hospicefoundation.org/ - the Hospice Foundation of America is a not-for-profit organization that provides leadership in the development and application of hospice and its philosophy of care. Through programs of professional development, research, public education and information, Hospice Foundation of America assists those who cope either personally or professionally with terminal illness, death, and the process of grief.

http://www.nhpco.org/ - the National Hospice & Palliative Care Organization (NHPCO) is the largest nonprofit membership organization representing hospice and palliative care programs and professionals in the United States. The organization is committed to improving end of life care and expanding access to hospice care with the goal of profoundly enhancing quality of life for people dying in America and their loved ones.