The following is a list of Resources available for patients and relatives. If you know of a resource not listed here, please send the information and URL here
Note: IAHPC does not endorse any of the products or recommendations listed here. It provides this list only as a service to our readers hoping that you will find it useful.
Abbotsford, BC Canada Hospice Society
"The Abbotsford Hospice Society exists to affirm the value and quality of life by providing support to persons in the last stage of living and to the bereaved, and by promotion of a coordinated inter-disciplinary program of palliative care in the community."
http://www.abbotsfordhospice.org
ACT - The Association for Children's Palliative Care
The Association for Children's Palliative Care is a UK-registered charity which is striving to achieve the best quality of life and care for all children and young people with life-threatening or life-limiting conditions and their families. ACT has three strands to its work: * Campaigning for the development of integrated, equitable and sustainable children's palliative care services. * Working with professionals to develop best practice and develop and disseminate the evidence base of what works best. * Empowering and supporting families, including young people, to have a voice in the development of children's palliative care services and providing them with the information they need to access the best care and support.
http://www.act.org.uk/
Aids.org
The mission of AIDS.ORG is to make access to HIV and AIDS information on the Internet faster, easier, and more accurate; and to connect professionals and the public together to share their knowledge and experiences. AIDS.ORG, Inc. is a nonprofit educational organization
Aids.org
American Academy of Hospice and Palliative Medicine (AAHPM)
AAHPM is an organization of physicians and other medical professionals dedicated to excellence in palliative medicine, the prevention and relief of suffering among patients and families by providing education and clinical practice standards, fostering research, facilitating personal and professional development of its members, and by public policy advocacy.
http://www.aahpm.org
American Association for Homecare
Find home health and home medical equipment providers, respiratory and infusion therapy, telemedicine, telehealth, rehab and assistive technology (in the USA)
www.aahomecare.org/
American Pain Foundation
Founded in 1997, the American Pain Foundation is an independent nonprofit organization serving people with pain through information, advocacy, and support. Our mission is to improve the quality of life for people with pain by raising public awareness, providing practical information, promoting research, and advocating to remove barriers and increase access to effective pain management.
http://www.painfoundation.org
Americans for the Better Care of the Dying
Americans for Better Care of the Dying (ABCD) aims to improve end-of-life care by learning which social and political changes will lead to enduring, efficient, and effective programs. They work with the public, clinicians, policymakers, and other end-of-life organizations to make change happen.
http://www.abcd-caring.org/
Association for Death Education & Counseling
"ADEC is one of the oldest interdisciplinary organizations in the field of dying, death and bereavement. Its nearly 2,000 members include a wide array of mental and medical health personnel, educators, clergy, funeral directors and volunteers."
http://www.adec.org
Beyond Indigo
This site is a a general resource site for those experiencing grief and loss with a wide array of offerings.
http://www.beyondindigo.com
Cancer Care
CancerCare is a national nonprofit organization whose mission is to provide free, professional support services to anyone affected by cancer: people with cancer, caregivers, children, loved ones, and the bereaved.
www.cancercare.org
Canuck Place Children's Hospice
The first free-standing hospice for children in North America, Canuck Place Children's Hospice offers specialized care for B.C. children living with progressive life-limiting illnesses and for their families.
http://www.canuckplace.com
Caring Connections
Caring Connections is a national consumer engagement initiative to improve care at the end of life.
www.CaringInfo.org
Caring 4 Cancer
Information about cancer diagnosis and treatments
http://cancer.caring4health.com/
Children's Hospice International
An organization that provides support and care to children and their families through resources and information.
http://www.chionline.org
Compassionate Friends
"The mission of The Compassionate Friends is to assist 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."
http://www.compassionatefriends.org
European Association of Palliative Care
EAPC OPERATES WITH THE FOLLOWING AIMS: * Promote the implementation of existing knowledge; train those who at any level are involved with the care of patients and families affected by incurable and advanced disease; and promote study and research. * Bring together those who study and practise the disciplines involved in the care of patients and families affected by advanced disease (doctors, nurses, social workers, psychologists and volunteers). * Promote and sponsor publications or periodicals concerning palliative care. * Unify national palliative care organizations and establish an international network for the exchange of information and expertise. * Address the ethical problems associated with the care of terminally ill patients.
http://www.eapcnet.org
Family Caregiver Alliance
Free online help for caregivers featuring support groups, a resource guide, and more for families coping with Alzheimer's disease, stroke, Parkinson's, ALS, and other disorders.
http://www.caregiver.org/caregiver/jsp/home.jsp
Family Hospice and Palliative Care
Support and care for people with life limiting illness and their families.
www.familyhospice.com
Get Palliative Care
Valuable information for patients and families coping with serious, complex illness including a palliative care Provider Directory, a definition and detailed description of what palliative care is, direct links to palliative care-related organizations and more.
www.getpalliativecare.org
Gilbert Guide
Gilbert Guide publishes the most comprehensive information on long-term care facilities and services in the United States.
www.gilbertguide.com
Growth House, Inc
Gateway to resources for life-threatening illness and end of life care
www.growthhouse.org
HIV and AIDS
Brief explanation of what is HIV/AIDS, how it is transmitted and treated
http://kidshealth.org/parent/infections/std/hiv.html
Hospice Care Resources Supporting Family and Community Legacies
Provides 8 home and hospice care online books for free reading and printing off. Books at basic, intermediate and advanced levels ranging from 130 to over 1,000 pages long.
http://www.legacies.ca
Hospice Foundation of America
Help those who cope personally or professionally with terminal illness, death and the process of grief and bereavement.
www.hospicefoundation.org
Hospice Net
Hospice Net provides information and support to patients and families facing life-threatening illnesses. Hospice Net is an independent, nonprofit organization working exclusively through the Internet.
http://www.hospicenet.org
Hospice Patients Alliance
"The Hospice Patients Alliance was formed in August of 1998 as a nonprofit charitable organization and is a corporation serving the general public throughout the United States. We were formed by experienced hospice staff and other health care professionals who saw that hospices were not always complying with the standards of care, and in fact, were in some cases, violating the rights of patients and families and exploiting them for financial gain, or not providing adequate care to control pain or other distressing symptoms during the end of life period."
http://www.hospicepatients.org
Intercultural Cancer Council's eight Regional Network homepages with regional Directories of Community Based Organizations, regional news and contact information on our regional network leadership.
http://iccnetwork.org/who/regionalnetworkleadership.htm
Kid Scope / Kids Cope
An internet resource for children and their families who are dealing with a parent who has cancer.
http://www.kidscope.org
Last Acts
Last Acts is a campaign to improve end-of-life care by a coalition of professional and consumer organizations. We believe in palliative care, focused on managing pain and making life better for individuals and families facing death.
http://www.lastacts.org
Legal Resources on Palliative Care and Pain Management
This website is a public resource of general information on the legal aspects of pain management and end-of-life care in the United States.
http://www.painlaw.org
MEDICARE
State Health Insurance Counseling and Assistance Programs (SHIPs)
www.medicare.gov/Publications/Search/Results.asp?PubID=02154&Type=PubID&Language=English
National Family Caregivers Association (NFCA)
"NFCA is a grass roots organization created to educate, support, empower and speak up for the millions of Americans who care for chronically ill, aged and disabled loved ones."
http://www.nfcacares.org
National Hospice and Palliative Care Organization NHPCO
The National Hospice and Palliative Care Organization (NHPCO) is a organization representing hospice and palliative care programs and professionals in the United States. Website includes directory of organizations and hospices in the US.
www.nhpco.org
National Family Caregivers Association (NFCA)
"NFCA is a grass roots organization created to educate, support, empower and speak up for the millions of Americans who care for chronically ill, aged and disabled loved ones."
http://www.nfcacares.org
Palliative Care Australia
"Palliative Care Australia is the national body for palliative care in Australia. Our goal is to work toward the relief of pain and suffering of dying people in Australia and the provision of the care they need."
http://www.pallcare.org.au
Palliative Dementia Care Resources
"We are committed to promoting public and professional awareness around palliative care needs facing individuals with advanced dementia and their caregivers. We are dedicated to providing access to appropriate online resources for family and professional caregivers. In order to be responsive to the needs of caregivers in managing life's changes, preparing for life's end, and coping with grief and loss, our content is focused on those topics that are often most pressing. Our mission is furthered by the efforts of researchers and educators in fields of palliative care and dementia care."
http://www.pdcronline.org
Palliative.info
Palliative.info offers an organized, up-to-date collection of links to palliative care resources on the internet, as well as locally developed palliative care material.
http://palliative.info
People Living with Cancer
People Living With Cancer is a patient information website of the American Society of Clinical Oncology (ASCO). Provides oncologist-approved information to help patients and families make informed health-care decisions.
www.plwc.org/portal/site/PLWC
StopPain.org Net of Care (American)
Information and Resources for Caregivers in an E-Newsletter format.
http://www.netofcare.org
Vista Care
Hospice care services. Find out if hospice is the answer for your loved one or yourself by answering ten, simple questions.
www.vistacare.com/
What is Hospice/Palliative Care?
www.helpguide.org/elder/hospice_care.htm
Wheel chairs, scooters, and medical equipment rentals (in the USA)
www.thescooterstore.com
www.ibotnow.com
www.caremedicalequipment.com
