national resource list
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Hear this textNational Resource List
While the main focus for this website is to help connect people living with life-limiting illnesses and their loved ones in our communities to regional resources, significant information and support are available nationally as well. The following is a sample of national organizations and foundations that provide information and support on palliative and end-of-life care or for specific diseases and conditions. This list is not comprehensive but can serve as a starting point in connecting users of the site to a broader range of resources on these important issues.
Act 59 of 2002, Pennsylvania Out of Hospital Do not Resuscitate Act
http://www.pabulletin.com/secure/data/vol32/32-50/2223.html
The Commonwealth of Pennsylvania: The information included at this site has been derived directly from the Pennsylvania Bulletin, the Commonwealth's official gazette for information and rulemaking. We have developed this site so that the latest published information may be accessed every Friday at 9 a.m. EDT, the first moment that the information may be furnished to the public. The Pennsylvania Bulletin Online includes the following: Statewide and local court rules; the Governor's Proclamations and Executive Orders; Actions by the General Assembly; Rulemakings by State agencies; Proposed Rulemakings by State agencies; and State agency notices.
AIDS Library
Phone: 1-215-985-4851
Fax: 1-215-985-4492
Email: This e-mail address is being protected from spambots. You need JavaScript enabled to view it
Founded in 1987, the AIDS Library was the nation's first public lending library dedicated to HIV/AIDS information. It contains a comprehensive multi-media, multi-lingual collection of monographs, serials, vertical files, audio and video cassettes relating to HIV/AIDS. In 1995, resources expanded to include the electronic database OASIS (Online AIDS Information Services) for HIV/AIDS information and services referral.
ALS Association
Phone: 1-818-880-9007
Fax: 1-818-880-9006
ALS Association Mission Statement: To lead the fight to cure and treat ALS through, global, cutting edge research, and to empower people with Lou Gehrig's Disease and their families to live fuller lives by providing them with compassionate care and support.
Alzheimer's Association
1-800-272-3900
The Alzheimer’s Association is the leading voluntary health organization in Alzheimer care, support and research. Our mission: To eliminate Alzheimer's disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health.
American Brain Tumor Association
Toll Free: 1-800-886-2282
1-847-827-9910
Email: This e-mail address is being protected from spambots. You need JavaScript enabled to view it
Founded in 1973, the American Brain Tumor Association (ABTA) was the first national, nonprofit organization dedicated to promoting brain tumor research, while offering information and support to brain tumor patients and their families. This year, the Des Plaines, Ill.-based ABTA will fund more than $2.6 million in research, and provide more than 1.3 million services and resources to brain tumor patients, their family members, and health care providers.
American Heart Association
1-800-242-8721
Email: This e-mail address is being protected from spambots. You need JavaScript enabled to view it
The American Heart Association is a national voluntary health agency whose mission is: "Building healthier lives, free of cardiovascular diseases and stroke." The mission statement was updated by the American Heart Association during its Annual Meeting in April 2007. The mission statement undergoes a formal review process every third year. The association's impact goal is to reduce coronary heart disease, stroke and risk by 25 percent by 2010. Progress toward the goal will be measured according to these indicators: Reduce the death rate from coronary heart disease and stroke by 25 percent. Reduce the prevalence of smoking, high blood cholesterol and physical inactivity by 25 percent. Reduce the rate of uncontrolled high blood pressure by 25 percent. Eliminate the growth of obesity and diabetes.
American Liver Foundation
http://www.liverfoundation.org
Phone: 1-212-668-1000
Fax: 1-212-483-8179
Our mission is to facilitate, advocate and promote education, support and research for the prevention, treatment and cure of liver disease.
American Parkinson Disease Association, Inc.
Phone: 1-800-223-2732
Fax: 1-718-981-4399
Email: This e-mail address is being protected from spambots. You need JavaScript enabled to view it
The American Parkinson Disease Association, Inc. was founded in 1961 to "ease the burden and find a cure" for Parkinson's disease. Headquartered in New York, the organization focuses its energies on research, patient support, education and raising public awareness of the disease.
American Stroke Association
http://www.strokeassociation.org
1-888-478-7653 or 1-800-242-8721
The American Stroke Association is a division of the American Heart Association that focuses on reducing risk, disability and death from stroke through research, education, fund raising and advocacy. The American Heart Association created the American Stroke Association after many years of increasing emphasis on stroke. We spend more money on stroke research and programs than any other organization except the federal government.
Association for Death Education and Counseling ADEC Headquarters
Phone: 1-847-509-0403
Fax: 1-847-480-9282
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.ADEC offers numerous educational opportunities through its annual conference, courses and workshops, its certification program, and via its acclaimed newsletter, The Forum.
Caregiver.com
1-800-829-2734
Online support for caregivers, about caregivers and by caregivers. Surveys, articles, forum where caregivers can share information and experiences.
Caring Connections
1-800-658-8898
Multilingual Line: 1-877-658-8896
Email: This e-mail address is being protected from spambots. You need JavaScript enabled to view it
Caring Connections, a program of the National Hospice and Palliative Care Organization (NHPCO), is a national consumer and community engagement initiative to improve care at the end of life, supported by a grant from The Robert Wood Johnson Foundation. Download state specific Advance Directives.
Center for Ethics in Health Care Oregon Health & Science University Physician Orders for Life-Sustaining Treatment Paradigm
1-503-494-3965 (Oregon)
The Physician Orders for Life-Sustaining Treatment (POLST) Paradigm program is designed to improve the quality of care people receive at the end of life. It is based on effective communication of patient wishes, documentation of medical orders on a brightly colored form and a promise by health care professionals to honor these wishes.
Center to Advance Palliative Care
http://www.capc.org/
1-212-201-2670
The Center to Advance Palliative Care (CAPC) provides health care professionals with the tools, training and technical assistance necessary to start and sustain successful palliative care programs in hospitals and other health care settings. CAPC is a national organization dedicated to increasing the availability of quality palliative care services for people facing serious illness. Direction and technical assistance are provided by Mount Sinai School of Medicine.
Children's Hospice International
1-800-2-4-CHILD or 1-703-684-0330
Email: This e-mail address is being protected from spambots. You need JavaScript enabled to view it
Children's Hospice International (CHI), a non-profit organization, was founded in 1983 to: Promote hospice support through pediatric care facilities; encourage the inclusion of children in existing and developing hospice, palliative and home care programs; include the hospice perspectives in all areas of pediatric care, education, and the public arena.
Compassion & Choices
http://www.compassionandchoices.org/care
1-800-247-7421
1-800-273-8255 ….. This emergency number answers 24 hours a day, 7 days a week for support/counseling.
Compassion & Choices offers end-of-life consultation. Our counseling is by phone, and our services are free and confidential. We provide information and support. We do not provide nor administer the means for aid in dying.
(The) Compassionate Friends, Inc
http://www.compassionatefriends.org
Phone: 1-877-969-0010
Fax: 1-630-990-0246
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.
Cystic Fibrosis Foundation
1-(800) FIGHT CF (344-4823)
Fax: 1-301-951-6378
Email: This e-mail address is being protected from spambots. You need JavaScript enabled to view it
The mission of the Cystic Fibrosis Foundation, a nonprofit donor-supported organization, is to assure the development of the means to cure and control cystic fibrosis and to improve the quality of life for those with the disease. The Foundation is the leading organization in the United States devoted to cystic fibrosis. It funds and accredits more than 115 CF care centers, 95 adult care programs and 50 affiliate programs, and has 80 chapters and branch offices nationwide.
(The) Dougy Center
Toll Free: 866-775-5683
Phone: 503-775-5683
Fax: 503-777-3097
A National Center for Grieving Children & Families, the Dougy Center, located in Oregon, provides a safe place for children, teens, young adults and their families who are grieving a death to share their experiences. We do this through peer support groups, education, and training.
End of Life / Palliative Care Education Resource Center
1-414-456-4353
Email: This e-mail address is being protected from spambots. You need JavaScript enabled to view it
The purpose of EPERC is to share educational resource material among the community of health professional educators involved in palliative care education.
Excellus Blue Cross Blue Shield MOLST (Medical Orders for Life-Sustaining Treatment)
1-585-238-4514
Individuals facing serious life-threatening illness and approaching death deserve to be treated with dignity, respect and compassion and to receive care that is focused on the individual’s goals for care. Families need and deserve to receive support. To achieve their goals, individuals need to plan ahead, know their choices, make sound decisions and share their wishes with their loved ones and health care professionals. This web site aims to educate and empower patients, families, health care and other professionals to accomplish this goal.
Gay Men's Health Crisis
1-800-243-7692
Gay Men's Health Crisis (GMHC) is a not-for-profit, volunteer-supported and community-based organization committed to national leadership in the fight against AIDS. We provide prevention and care services to more than 15,000 men, women and families that are living with, or affected by, HIV/AIDS in New York City, and advocate for scientific, evidence-based public health solutions for hundreds of thousands worldwide.
Highmark Geriatric Resource Binder
https://www.highmark.com/health/professionals/gerbinder.html
412-544-0392
This Geriatric Resource Binder was developed by Highmark’s Geriatric Clinical Quality Improvement Initiatives Committee. It’s a comprehensive resource designed to help health care professionals assess problematic areas in the older adult population.
Hospice and Palliative Nurses Association
Phone: 412-787-9301
Fax: 412-787-9305
Email: This e-mail address is being protected from spambots. You need JavaScript enabled to view it
HPNA has become the nationally recognized organization providing resources and support for advanced practice nurses, registered nurses, licensed practical nurses, and nursing assistants who care for people with life-limiting and terminal illness.
Hospice Foundation of America
http://www.hospicefoundation.org
1-800-854-3402
Hospice Foundation of America provides leadership in the development and application of hospice and its philosophy of care with the goal of enhancing the U.S. health care system and the role of hospice within it.
(The) Leukemia and Lymphoma Society of America
1-800-955-4572
The Leukemia & Lymphoma Society (LLS) is the world's largest voluntary health organization dedicated to funding blood cancer research, education and patient services. LLS's mission: Cure leukemia, lymphoma, Hodgkin's disease and myeloma, and improve the quality of life of patients and their families. Since its founding in 1949, LLS has invested more than $600 million in research specifically targeting blood cancers.
National Association of People with AIDS
Phone: 1-866-846-9366
Fax: 1-240-247-0574
The National Association of People with AIDS, a 501(c)(3) certified non-profit organization, was founded in 1983 by members of the Patient Advisory Committee of the Second National AIDS Forum, held in Denver, Colorado by what is now the National Lesbian and Gay Health Association. The committee members came from New York, San Francisco, Los Angeles, Minneapolis and Houston to assure that people living with AIDS were officially involved in the deliberations and had a strong voice in the proceedings. The committee organizing was led by Bobbi Campbell of San Francisco and Michael Callen of New York City and resulted in the adoption of the term "people with AIDS" (PWA) as a rejection of "victim," which implies defeat, or "patient," which implies dependence on the care of others.
National Brain Tumor Society
1-800-770-8287
Patient Services: 1-800-9342873
National Brain Tumor Society (NBTS) is a leader in the brain tumor community, bringing together the best of research and patient services to be a comprehensive resource for patients, families, caregivers, researchers, and medical professionals. We have a national presence, with offices on both coasts and activities and influence around the United States.
National Cancer Institute
1-800-422-6237
The National Cancer Institute coordinates the National Cancer Program, which conducts and supports research, training, health information dissemination, and other programs with respect to the cause, diagnosis, prevention, and treatment of cancer, rehabilitation from cancer, and the continuing care of cancer patients and the families of cancer patients.
National Coalition for Cancer Survivorship
Phone: 1-888-650-9127
Fax: 1-301-565-9670
To order Cancer Survival Toolbox® call 1-877-622-7937
Email: This e-mail address is being protected from spambots. You need JavaScript enabled to view it
The National Coalition for Cancer Survivorship is the oldest survivor-led cancer advocacy organization in the country, advocating for quality cancer care for all Americans and empowering cancer survivors. NCCS believes in evidence-based advocacy for systemic changes at the federal level in how the nation researches, regulates, finances, and delivers quality cancer care. NCCS organizes Cancer Advocacy Now!,™ a legislative advocacy network that engages constituents across the country in federal cancer-related issues. Patient education is also a priority for NCCS. We believe that access to credible and accurate patient information, such as NCCS’s award-winning Cancer Survival Toolbox® is key to demanding and receiving quality cancer care.
National Hospice & Palliative Care Organization
Phone: 1-800-658-8898
Fax: 1-703-837-1233
NHPCO’s Vision: A world where individuals and families facing serious illness, death, and grief will experience the best that humankind can offer. NHPCO’s Mission: To lead and mobilize social change for improved care at the end of life.
National Kidney Foundation
Phone: 1-800-622-9010
Fax: 1-212-689-9261
The National Kidney Foundation, a major voluntary nonprofit health organization, is dedicated to preventing kidney and urinary tract diseases, improving the health and well-being of individuals and families affected by kidney disease and increasing the availability of all organs for transplantation. Through its more than 50 local offices nationwide, the NKF provides vital patient and community services, conducts extensive public and professional education, advocates for patients through legislative action and supports kidney research to identify new treatments.
National Parkinson Foundation, Inc.
Phone: 1-800-327-4545
Fax: 1-305-243-6073
Email: This e-mail address is being protected from spambots. You need JavaScript enabled to view it
The mission of the National Parkinson Foundation is to improve the quality of care for people with Parkinson’s disease through research, education and outreach. Founded in 1957, NPF is a leading national organization with an extensive grassroots network of Centers of Excellence, chapters and support groups in the United States, Canada and internationally. Unique among the national Parkinson’s organizations, NPF is the only organization with a singular focus on improving the quality of care in Parkinson’s disease. Since 1982, NPF has funded more than $140 million in care, research and support services. The core of our efforts is the NPF Center of Excellence network, 44 leading medical centers around the globe that deliver care to more than 50,000 Parkinson’s patients. Through this network, NPF creates a community of health care professionals dedicated to improving clinical care in Parkinson’s disease. In each of our research, education and outreach programs, NPF is dedicated to promoting our passionate belief that the best care is a comprehensive approach that addresses the whole person and the full range of symptoms of the disease.
National Stroke Association
1-800-787-6537
National Stroke Association is the only national organization in the United States that focuses 100% of its efforts on stroke. National Stroke Association achieves its mission to lower the incidence and impact of stroke by developing compelling community outreach programs, calling for continued improvement in the quality of stroke patient care, and educating both healthcare professionals and the general public about stroke.
Pennsylvania Medical Society
Toll Free in PA only: 1-800-228-7823
1-717-558-7750
The Pennsylvania Medical Society is 20,000 physicians and medical students working together to:Represent physicians in public venues including the government, insurance companies, and the media, Provide members with timely information, expert services, and professional support on medical practice issues, Advance public health, public policy, medical science, education, and ethics, Advocate for patients.
Susan G. Komen for the Cure
1-877 GO KOMEN (1-877-465-6636)
Susan G. Komen fought breast cancer with her heart, body and soul. Throughout her diagnosis, treatments, and endless days in the hospital, she spent her time thinking of ways to make life better for other women battling breast cancer instead of worrying about her own situation. That concern for others continued even as Susan neared the end of her fight. Moved by Susan’s compassion for others and committed to making a difference, Nancy G. Brinker promised her sister that she would do everything in her power to end breast cancer forever.
University of Pittsburgh Institute on Aging
1-866-430-8742 ……. This number answers 24 hours.
Email: This e-mail address is being protected from spambots. You need JavaScript enabled to view it
In keeping with its mission to improve the health and well-being of seniors in western Pennsylvania, the University of Pittsburgh Institute on Aging offers information on a broad range of services, career development opportunities, and other resources to assist professionals in providing direct or indirect care to older adults. UPIA also provides information about local, state, regional and national organizations that strive to improve the lives of older adults and their families, while simultaneously meeting the legitimate needs of professionals in aging.
University of Pittsburgh Institute to Enhance Palliative Care
http://www.dom.pitt.edu/dgim/IEPC
Phone: 412-647-5700
Fax: 412-647-5877
The mission of the Institute is to improve the access to and quality of palliative care in Western Pennsylvania by (1) educating healthcare providers regarding palliative care, (2) conducting research into the most effective ways to provide palliative care, (3) raising public awareness about the availability of palliative care, and (4) advancing public policies that support excellent, high-quality care for people who are seriously ill.
Washington State Medical Association POLST (Physician Orders for Life-Sustaining Treatment)
1-800-552-0612
The WSMA is a private, non-profit membership organization for physicians. We are funded by physician membership dues, not by the state. The WSMA works on behalf of our members and their patients to provide educational seminars, physician advocacy efforts, lobbying and other services.
West Virginia Center for End-of-Life Care POST (Physician Orders for Scope of Treatment)
1-877-209-8086
The West Virginia Center for End-of-Life Care provides assistance to West Virginians so that at the end of life they know what medical treatments they want and their wishes are respected.
