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Reference Library
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The diagnosis of a life-threatening medical condition often launches individuals and families into a complex and confusing time of decision-making. In particular, individuals faced with a serious chronic condition will likely need both acute and chronic care involving multiple services from multiple professionals and multiple organizations at multiple sites, including the home. The coordination of such care can be difficult and frustrating. Service providers can often assist in the process, including advance care planning.
This is a non-exhaustive list of national and international organizations and agencies. If you would like to have yours posted, please provide your contact information in our Guest Book.
American Academy of Hospice and Palliative MedicineOriginally organized as the Academy of Hospice Physicians in 1988, the American Academy of Hospice and Palliative Medicine (AAHPM) is the only organization in the United States for physicians dedicated to the advancement of hospice/palliative medicine, its practice, research and education. AAHPM members are physicians from many medical specialties who are committed to furthering and fostering the practice of hospice/palliative care for the terminally ill and their families.
Americans for Better Care of the DyingABCD is a Washington, DC based organization dedicated to ensuring that all Americans can count on good end of life care. They strive to help organizations and individuals fix their own community care systems and assist health care organizations in implementing rapid-cycle quality improvement methods. ABCD are committed to ensuring that every person experiences comfort, dignity, and meaning at the end of life, and that every loved one knows that life came to a close in a dignified and meaningful way.
American Cancer Societyhttp://www.cancer.org/docroot/home/index.asp ACS quotes “No matter who you are, We can help.” This site you can find anything you need to learn about different types of cancer, risk factors, prevention, treatment, and more. You can also read stories of hope from people whose lives have been touched by cancer.
Aplastic Anemia & MDS International Foundation, Inc. In the United States, thousands of men, women and children are stricken with these non-contagious bone marrow disease every year. They occur when the bone marrow stops making enough health blood cells. Although all of the causes are still unknown, they have been linked to toxins and viruses that we are in contact with every day. This foundation helps patients and their families from bone marrow failure diseases.
Association for Death Education and CounselingThe Association for Death Education and Counseling is an international professional organization dedicated to promoting excellence in death education and counseling.
Beth Israel Hospital, New York, NY http://www.stoppain.org/caregivers/index.html Department of Pain Medicine and Palliative Care This site is provided to help you obtain information about caregiving, recognize when you need help, ask for and accept assistance from others, and take care of yourself
Caitlin Raymond International Registry
The Caitlin Raymond International Registry is a comprehensive resource for
patients and physicians conducting a search for unrelated bone marrow or cord
blood donor. The Registry accesses more than 3.9
California Candlelighter Association Candlelighters – the Sisters and Brothers working together for common purposes.
Canadian Hospice Palliative Care Association The Canadian Hospice Palliative Care Association (CHPCA) is the national association which provides leadership in hospice palliative care in Canada.
Canadian Institutes of Health Researchhttp://www.cihr-irsc.gc.ca/index.shtml CIHR strives for excellence in creating new knowledge and translating it into improved health for all Canadians. (Cancer Research and Palliative Care Research can be found)
Caregiver Network http://www.caregiver.on.ca/index.html Caregiver Network Inc.(CNI), the first of its kind in Canada, is a resource centre created to help caregivers of the elderly and ill. Our goal is to make caregivers' lives easier by providing information on the Internet and in our newsletter (see CNI Services), education through the 13-part TV/video series "Caregiving with June Callwood", the Canadian Aging and Caregiving Resource Guide and personal assistance and support through our seminar series.
Center of Mental Health and AgingThe University of Alabama’s Center for Mental Health and Aging (CMHA) is to develop new knowledge, test new intervention, and disseminate information related to mental health and aging. Focus areas are Elder Caregiving, Mental Health of Rural Elders, Quality of Care in Nursing Homes, and Palliative Care and End-of-Life Issues.
City of Hope National Medical CenterCity of Hope, a Comprehensive Cancer Center, is an innovative biomedical research, treatment and educational institution. Located near Los Angeles, California, City of Hope is dedicated to the prevention and cure of cancer, HIV/AIDS, diabetes, and other life-threatening diseases.
The Cochrane Pain, Palliative Care and Supportive Care http://www.jr2.ox.ac.uk/cochrane/ (PaPaS) Collaborative Review Group The Cochrane Collaboration is an international, non-profit organization that aims to help people make well-informed decisions about healthcare by preparing and maintaining ‘systematic reviews’ of the effects of treatments.
Faith in ActionFaith in Action volunteers like those highlighted here come from every region of the country, follow many faiths, and belong to a wide array of ethnic and cultural communities. But, they all share the desire to help neighbors who face long-term conditions to lead the lives they choose to lead for as long as possible.
Family
Caregiver
http://www.caregiver.org/caregiver/jsp/home.jsp FCA is a public voice for caregivers. Their pioneering programs "information, educations, services, research, and advocacy" support and sustain the important work of families nationwide caring for loved ones with chronic, disabling heath conditions.
Growth House Growth House, Inc., provides this award-winning portal as your international gateway to resources for life-threatening illness and end of life care. Our primary mission is to improve the quality of compassionate care for people who are dying through public education and global professional collaboration.
The Hospice of the Good Shepherd http://www.hospiceofthegoodshepherd.com/ The Hospice of the Good Shepherd is an independent charity, situated in the village of Backford (between Chester and Ellesmere Port, UK) offering free specialist palliative care for patients with life threatening illness,and providing medical and nursing support, together with social,emotional and spiritual support for Patients and their families,in the area of Deeside, Ellesmere Port and Chester. *For additional information, please check out: http://www.hospicefed.org/hospice_pages/goodshep.html (This site serves towns in the Greater Boston area.)
Initiative for Pediatric Palliative CareThe Initiative for Pediatric Palliative Care (IPPC) is both an education and a quality improvement effort, aimed at enhancing family-centered care for children living with life-threatening conditions. IPPC’s comprehensive, interdisciplinary curriculum addresses knowledge, attitudes and skills that health care professionals need in order to better serve children and families.
Institute of Medicine of the National Academies
The Institute of
Medicine serves as adviser to the nation to improve health.
International Association for Hospice and Palliative Care Provides a huge selection of information about hospice and palliative care services.
International
Association for the Study of Pain IASP is open to scientists, physicians, dentists, psychologists, nurses, physical therapists, and other health professionals actively engaged in pain research and to those who have an interest in the treatment of pain.
International Observatory on End of Life Care http://www.eolc-observatory.net/ Provides research-based information about hospice and palliative care provision in the international context.
Johns Hopkins Nursinghttp://www.hopkinsnursing.org/ For the 13th consecutive year, The Johns Hopkins Hospital has topped U.S. News & World Report's rankings of American hospitals. This year's annual guide reports results of a survey of a hospital's reputation in 17 medical specialties among a national sample of doctors, along with analysis of objective indicators such as death rates, technology, nurse staffing, service mix and discharge planning.
Medical College of Wisconsin Palliative Care Programhttp://www.mcw.edu/display/router.asp?docid=196 The Palliative Medicine Program is committed to improving care for the dying in America through the development, implementation and dissemination of innovative education and clinical care programs.
Mt. Sinai Medical Centerhttp://www.mssm.edu/palliative/ The Palliative Care Program at Mount Sinai Medical Center is a national leader in palliative medicine. The Institute is dedicated to improving the lives of people facing serious and life-threatening illness. Through their high-quality clinical services and renowned research programs and education initiatives, they are advancing the field and setting the standard for palliative care throughout the United States.
Multinational Association for Supportive Care in Cancer MASCC has begun it's commitment and journey in bringing together healthcare professional from numerous countries and multidisciplinary fields to provide with the latest supportive cancer care research online.
You are able to stay current with Journal Publications in Supportive Care. National Organization of Rare Disorders Representing patients and families affected by rare diseases.
National Hospice Foundationhttp://www.nationalhospicefoundation.org/templates/1/index.cfm Expanding America’s vision of end of life care
Palliative Care at Kansas University Medical Centerhttp://www2.kumc.edu/palliative/index.html The KU Medical Center Palliative Care Team provides professional aggressive comfort care and symptom management to patients at a time when their disease is no longer responsive to curative treatments.
St. Michael’s Hospital, Toronto, Ontariohttp://www.stmichaelshospital.com/ A Catholic hospital founded in 1892 by the Sisters of St. Joseph to care for the sick and the poor of Toronto’s inner city, St. Michael’s Hospital has a long and proud tradition of caring and compassion. Since that time, the hospital has preserved this commitment to compassion and excellence, while evolving into a center for innovation in patient care, teaching and research.
University of California, Davis Cancer Centerhttp://www.ucdmc.ucdavis.edu/cancer/ UC Davis Cancer Center has achieved designation by the National Cancer Institute as the nation's top cancer organization.
University of Washington: The Center for Palliative Care Educationhttp://depts.washington.edu/pallcare/ The Center for Palliative Care Education is an educational resource center and training program to improve palliative care for people with HIV/AIDS by increasing the knowledge, skills, and comfort level of clinicians to provide this care.
University of California, Los Angeles’ Jonsson Comprehensive Cancer Centerhttp://www.cancer.mednet.ucla.edu/ UCLA's JCCC has established an international reputation for developing new cancer therapies, providing the best in experimental and traditional treatments, and expertly guiding and training the next generation of medical researchers.
The University of Michigan C.S. Mott Children’s Hospitalhttp://www.med.umich.edu/mott/index.html The University of Michigan C.S. Mott Children's Hospital is one of the largest pediatric academic health science centers in the country with an international expectation for excellence in clinical care, teaching and research. It is poised to lead pediatric medicine into the 21st century by promising major research initiatives, providing exceptional patient care and having the next generation of pediatric health care providers.
UPMC Shadyside Hospitalhttp://www.upmc.edu/palliativecare/ The University of Pittsburgh, in collaboration with Family Hospice and Palliative Care, has established The Institute to Enhance Palliative Care, a community of scholars and health professionals from diverse fields who have joined together to improve care for the seriously ill and dying.
Children's Hospice and Palliative Care:
Acorns Children’s Hospice in Birmingham, UK Acorns cares for children who are not expected to live until adulthood from across the West Midlands Health Authority region and North Gloucestershire. Acorns aims to provide holistic care, with physical, social, emotional and spiritual dimensions.
Association for Children with Life-threatening or Terminal Conditions and their Families http://www.act.org.uk/pages/start.asp ACT is the only UK organization working to improve care and services for all children in the UK with life-threatening or terminal conditions and their families.
Candlelighters Childhood Cancer Foundationhttp://www.candlelighters.org/ Candlelighters Childhood Cancer Foundation (CCCF) National Office is a national non-profit membership organization whose mission is to educate, support, serve, and advocate for families of children with cancer, survivors of childhood cancer, and the professionals who care for them.
Children's Hospice International
The CHI Program for All-Inclusive Care for Children and their Families® provides
a
Hope Street Kidshttp://www.hopestreetkids.org/ The mission of Hope Street Kids is to eliminate childhood cancer through advocacy, education and cutting-edge research, and to help support children with cancer and their families during and after treatment.
Warsaw Hospice for Childrenhttp://www.hospicjum.waw.pl/english/info.htm The Warsaw Hospice for Children was founded in September 1994 as non-governmental organization and the first hospice for children in Poland.
Children’s Hospitals:
Children’s Hospital of Boston/Dana-Faber Cancer Institute http://www.childrenshospital.org/ http://www.dfci.harvard.edu/ The Pediatric Advanced Care Team is a palliative care service for children with advanced illnesses at Children's Hospital of Boston and the Dana-Farber Cancer Institute. Established in 1997, this service is one of the first of its kind in the United States.
The Children’s Hospital of Philadelphia http://www.chop.edu/consumer/index.jsp Patients between the ages of 5 and 18 who are receiving bone marrow transplants are eligible for participation in this quality improvement initiative. A specially trained and certified art therapist provides six art therapy sessions to support the patient's involvement in his or her own illness experience and to foster verbal and non-verbal communication with and among the patient, the family, and the healthcare team.
Children’s Memorial Hospitalhttp://www.childrensmemorial.org/ Children's Memorial treats children of all ages, offering a breadth and depth of services. We provide high-quality programs in virtually every known pediatric specialty and have multiple staff members—all highly qualified—within each of those areas.
Connecticut Children’s Medical CenterConnecticut Children's Medical Center is dedicated to improving the physical and emotional health of children. The people of Connecticut Children's Medical Center embrace a comprehensive view of child health, and strive for preeminence in helping each child reach for and achieve maximum potential and independence.
Johns Hopkins Children’s Center http://www.hopkinschildrens.org/ Harriet Lane Compassionate Care—an interdisciplinary palliative care team have developed a comprehensive system of support for health care professionals, including providing information about pediatric palliative care, clinical support for the interdisciplinary team, emotional support and opportunities to make meaning in the face of suffering, death and grief. Lucile Packard Children’s HospitalLPCH, Stanford University Medical Center helps family, friends, healthcare providers, and the terminally ill child work through the fear and anxiety associated with death and dying by providing information about this process and what to expect.
University of California, San Francisco Children’s Hospital http://www.ucsfhealth.org/childrens/index.html Palliative Care Program is shaped by a comprehensive needs assessment, which includes a medical record audit of pediatric hospital deaths and surveys of both staff and parents to better understand their perceptions of end-of-life care provided in the hospital setting.
University of Chicago Children’s HospitalThe University of Chicago Children's Hospital has provided comprehensive, innovative medical care to children of all social and economic backgrounds. UCCH is dedicated to enhancing the health and wellness of children through patient care, education, and research into the causes and cure of childhood diseases. As a major tertiary referral center, the Hospital sees children from the Chicago area, the Midwest, and around the world who have the most complex medical problems.
Vanderbilt University Medical Center http://www.vanderbiltchildrens.com/ Vanderbilt Children's Hospital is dedicated to meeting the unique healthcare needs of children, from newborns to young adults, by providing primary and sub-specialty services and serving as a regional referral center. By continuing to invest in the future well-being of children, families and the community, the hospital is committed to furthering family-centered care, research, technology, and education.
Yale-New Haven Children’s Hospitalhttp://www.ynhh.org/pediatrics/cancer/index.html Children treated at Yale-New Haven have access to the latest and most advanced treatments, as well as extensive support services. Their program focuses on giving personalized attention and care, which is so crucial in helping children and their families through the difficult time.
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