Death & Dying Resource List

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ALS Association
21021 Ventura Blvd., Suite 321, Woodland Hills, CA 91364.
National information resource for Amyotrophic Lateral Sclerosis (ALS), commonly referred to as Lou Gehrig's disease.
Phone: 818-340-7500 Web site: http://www.alsa.org.

American Academy of Hospice and Palliative Medicine
AAHPM is an organization for physicians who are
committed to furthering and fostering the practice of
hospice/palliative care for the terminally ill and their
families. http://www.aahpm.org

ABCD- Americans for Better Care of the Dying
ABCD is a non-profit coalition of citizens and
professionals united to ensure that public policy
addresses the needs of individuals and families coping
with a fatal illness.  http://www.abcd-caring.com

Agency for Health Care Policy and Research
AHCPR is the lead agency charged with supporting
research designed to improve the quality of health care,
reduce its cost, and broaden access to essential
services.  http://www.ahcpr.gov

Alzheimer's Association
919 N. Michigan Ave., Suite 1000, Chicago, IL 60611.
The only national voluntary organization dedicated to curing Alzheimer's disease and providing education and support to people with he disease and their caregivers. They can refer you to local chapters and support groups.

American Association for Homes and Services for the
Aging AAHSA represents not-for-profit organizations dedicated
to providing high quality health care, housing and
services to the elderly http://www.aahsa.org

American Brain Tumor Association
2720 River Road, Suite 146, Des Plains, IL 60018.
A not-for-profit organization offering publications addressing brain tumors, their treatment, and coping with the disease. They also maintain a nationwide listing of support groups.
Phone: 800-886-2282 Web site: http://www.abta.org/

American Cancer Society
1599 Clifton Road, NE, Atlanta, GA 30329-4251.
The nationwide, community-based voluntary health organization dedicated to eliminating cancer as a major health problem.
Phone: 800-ACS-2345 Web site: http://www.cancer.org.

The American College of American Society of Internal
Medicine (ACP-ASIM) ACP-ASIM is a medical specialty society designed to enhance the quality and effectiveness of health care by
fostering excellence and professionalism in the practice of medicine. http://www.acponline.org/index.html

The American Geriatrics Society
AGS is a professional organization of health care
providers dedicated to improving and effecting change
for the health and well being of all older adults. http://www.americangeriatrics.org

American Heart Association
7272 Greenville Avenue, Dallas, TX 75231.
Committed to reducing disability and death from cardiovascular diseases and stroke.
Phone: 214-373-6300 or 800-AHA-USA1 (to be connected to your closest affiliate) Web site: http://www.americanheart.org

American Liver Foundation
1425 Pompton Avenue, Cedar Grove, NJ 07009.
National non-profit organization dedicated to preventing, treating, and conquering hepatitis and other diseases of the liver and gallbladder.
Phone: 800-223-0179 Web site: http://www.liverfoundation.org.

American Lung Association
1740 Broadway, New York, NY 10019-4374.
Dedicated to preventing lung disease with a nationwide priority on asthma.
Phone: 212-315-8700 E-mail: info@lungusa.org
Web site: http://www.lungusa.org.

American Medical Association
515 N. State Street, Chicago, IL 60610.
The AMA’s web site contains extensive links to disease- and condition-related sites on the www.
Phone: 312-464-5000 Web site: http://www.ama-assn.org.

American Nurses Association
600 Maryland Ave. SW, Suite 100 West, Washington, DC 20024-2571.
The largest professional organization representing registered nurses in the United States.
Phone: 800-274-4ANA Web site: http://www.nursingworld.org.

American Parkinson Disease Association
1250 Hylan Blvd., Suite 4B, Staten Island, NY 10305.
Committed to serving the Parkinson community through a comprehensive program of research, education and support.
Phone: 718-981-8001 or 800-223-2732 E-mail: apda@admin.con2.com.

American Pain Society
APS is a non-profit multidisciplinary educational and
scientific organization dedicated to serving people in
pain, through research, education, treatment, and
professional practice.http://www.ampainsoc.org

American Society for the Advancement of Palliative
Care ASAP Care is a personal effort to help expedite
the reform of terminal health care practice.

American Society for Bioethics and Humanities
ASBH is a professional society of individuals,
organizations, and institutions interested in bioethics
and humanities. http://www.asbh.org

American Society of Law, Medicine and Ethics
ASLME provides high-quality scholarship, debate, and
critical thought to the community of professionals at the
intersection of law, health care, policy, and ethics.http://www.aslme.org

Approaching Death: Improving Care at the End of Life
This report, from a committee of the Institute of
Medicine, calls for changes to improve end-of-life care,
better training of health care professionals, reform of
outdated laws that inhibit the use of pain-relieving
drugs, and testing of new payment options.

Association of Cancer Online Resources Inc.
ACOR is a non-profit patient advocacy organization
founded to develop, support and represent Internet
based resources for up-to date information to cancer
patients.http://www.medinfo.org

Association for Death Education & Counseling
638 Prospect Ave., Hartford, CT 06105.
ADEC is dedicated to improving the quality of death education and death related counseling and caregiving.
Phone: 860-586-7503 Web site: http://www.adec.org.

Association of Pediatric Oncology Nurses
4700 W. Lake Ave., Glenview, IL 60025.
Phone: 847-375-4724 FAX: 847-375-47777 Web site: http://www.apon.org.

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Better Health
Better Health is an online interactive forum offering
support and help on a variety of medical concerns and
conditions.

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Candlelighters Childhood Cancer Foundation
7910 Woodmont Ave., Suite 460, Bethesda, MD 20814.
Provides support and information to families with children who have cancer, to professionals, and to adult survivors.
Phone: 301-657-8401 or 800-366-2223
Web site: http://www.candlelighters.org

Caregiver Network
Based in Toronto, Canada the goal of CNI is to be a
national single information source to make your life as
a caregiver easier.http://www.caregiver.on.ca:80/index.html

Caregiver Survival Resources
Caregiving is becoming a significant issue for many
people. This resource provides help to others to cope
with the demands of caregiving. http://www.caregiver911.com/

Catholic Health Association of the United States
Catholic-sponsored health organizations provide the
aged and chronically ill population with a broad
spectrum of high-quality professional services.http://www.chausa.org

Center to Improve Care of the Dying
CICD is an, interdisciplinary team of committed
individuals, engaged in research, public advocacy, and
education activities to improve the care of the dying
and their families.

Children’s Hospice International
2202 Mt. Vernon Ave., Suite 3C, Alexandria, VA 22301.
Provides medical and technical assistance, research and education for children with life threatening conditions and their families.
Phone: 702-684-0330 E-mail: chiorg@aol.com
Web site: http://www.chionline.org

Choice In Dying
200 Varick Street, New York, NY 10014.
Provides information about advance-directives (Living Wills and Durable Powers of Attorney for Health Care). Call for state-specific forms.
Phone: 800-989-WILL.

Chronicle of Philanthropy
The newspaper of the non-profit world.http://www.philanthropy.com

Clinical Care Options-HealthCare Communications
Group  A state of the art medical resource for healthcare
professionals.

The Commonwealth Fund
The Commonwealth Fund engages in independent
research on health and social policy issues. http://www.cmwf.org/

The Cochrane Pain, Palliative Care and Suportive Care
Collaborative Review Group
The work of the PaPaS includes the preparation,
maintenance & dissemination of systemic reviews of
randomized controlled trials of interventions concerned
with pain and palliative care.http://www.jr2.ox.ac.uk/Cochrane/

The Compassionate Friends
PO Box 3696, Oak Brook, IL 60522-03696.
A self-help organization offering friendship and understanding to parents and siblings following the death of a child. They have 580 chapters nationwide.
Phone: 630-990-0010. Web site: http://longhorn.jjt.com/~tcf_national/

Compassion in Dying
CID assists patients & families in reviewing cases of
suspected inadequate treatment of pain, at no charge.
If you know of a case where a dying patient is believed
to have received inadequate pain care contact CID.http://www.compassionindying.org/

Cystic Fibrosis Foundation
6931 Arlington Road, Bethesda, MD 20814.
Dedicated to the development of means to cure and control cystic fibrosis (CF) and to improve the quality of life for those with the disease.
Phone: 800-344-4823.

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Death, Dying and Grief Resources
This web site represents a large and comprehensive
collection of Internet resources with a holistic
perspective of the death process.

Death NET
DeathNET is an international archive specializing in all
aspects of death and dying with a sincere respect for
every point of view, encompassing the legal, medical,
and cultural aspects of human mortality.

The Dougy Center
PO Box 86582, Portland, OR 97286.
Provides support groups for grieving children that are age-specific (3-5, 6-12, teens) and loss-specific (parent death, sibling death, survivors of homicide/violent death, survivors of suicide). The Center also provides consultations to schools.
Phone: 503-775-5683. E-mail: help@dougy.org

Dying Well
Defining Wellness through the 'End of Life': Resources for patients and families facing life-limiting illness. http://www.dyingwell.com/

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Elizabeth Kubler Ross, M.D., "On Death and Dying"
Elizabeth Kubler-Ross, M.D. is widely recognized as one of the foremost authorities in the field of death & dying. "On Death and Dying", is required reading in most major medical and nursing schools and graduate schools of psychiatry and theology. http://www.doubleclickd.com/kubler.html

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Funeral and Memorial Societies of America
FAMSA is dedicated to a consumer’s right to chose a meaningful, dignified, affordable funeral.
Web site: http://www.funerals.org/famsa

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Gilda’s Club
195 W. Houston Street, New York, NY 10014.
Psychological support community for people with cancer, their families and friends, offering support, meditation and networking groups, potluck suppers, and social events. The Club also offers special programs for children whose parents or family members have cancer or who have cancer themselves. There are ten affiliates across the country.
Phone: 212-647-9700 E-mail: mannheim@walrus.com.

GriefNet
A comprehensive gateway to bereavement and grief-related resources on the www.
Web site: http://www.rivendell.org.

The Growth House
A comprehensive international gateway to resources on the web related to life-threatening illnesses and end-of-life issues.
Web site: http://www.growthhouse.org.

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Healthfinder
Consumer healthcare information from the U.S. Government, with selected online publications, databases, web sites and support groups.
Web site: 

Hemlock Society USA and PRO-USA
For those who support the rights of the terminally ill to choose
death with dignity, who support personal control and
autonomy in end-of-life decisions, and who believe that laws
should allow a terminally ill person the choice of medical
assistance in hastening their death.  http://www.hemlock.org/hemlock/index.html

Hospice Foundation of America
2001 S Street NW, Suite 300, Washington, DC 20009.
Sponsors an annual Living with Grief teleconference series, a monthly bereavement newsletter and other publications.
Phone: 202-638-5419

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Innovations in End-of-Life Care
Innovations is an international peer-reviewed journal and
on-line forum highlighting promising practices that improve
end-of-life care. http://www.edc.org/lastacts/

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. http://www.pslgroup.com/dg/1ff02.htm

International Hospice Institute & College
A non-profit organization dedicated to sharing hospice and
palliative care information world-wide. http://www.hospicecare.com

International THEOS Foundation
322 Blvd. of the Allies, Suite 105, Pittsburgh, PA 15222
THEOS (They Help Each Other Spiritually) helps people whose spouses have died, providing educational materials and emotional support for the newly widowed.
Phone: 412-471-7779.

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Longwood College Library: Doctor Assisted Suicide--a guide
to WEB Sites and the Literature The selections gathered here provide varied points of view, some history as well as print and electronic coverage on PAS.http://web.lwc.edu/administrative/library/suic.htm

Losing Lisa: Living with death-one family's journey Plain
Dealer reporter, Connie Schultz, chronicles Lisa Hearey's last
four months of her life and her family for a full year after she
died. http://www.cleveland.com/living/health/cancer/lisa/intro.phtml

Leukemia Society of America
600 Third Ave., New York, NY 10016.
Dedicated tot he cure of leukemia and it’s related cancers – lymphoma, multiple myeloma and Hodgkin’s disease – and to improve the quality of life of patients and their families.
Phone: 212-573-8484

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Medical College of Wisconsin Palliative Care Program
This program is committed to improving care for the dying in
America through the development, implementation and
dissemination of innovative education and clinical care
programs. http://www.mcw.edu/pallmed/

Medicare Rights Center
The Medicare Rights Center (MRC) provides free counseling
services to Medicare beneficiaries who cannot afford private
assistance for Medicare-related issues. http://www.medicarerights.org

Memorial Sloan Kettering Cancer Center
MSKCC's web site provides a wide range of information for
medical professionals, patients, their families, and the
general public.http://www.mskcc.org

Multiple Sclerosis Association
706 Haddonfield Rd. Cherry Hill, NJ 08002.
Provides direct care services to those with MS, including a national toll-free hotline, peer counseling, support groups, therapeutic equipment loan program, educational literature, and symptom management therapies.
Phone: 800-833-4672.

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National Association of People with AIDS
1413 K St. NW, Washington DC 20036.
NAPWA provides free publications on treatment and have an extensive information and referral department that includes a fax-on-demand system. They also have a health and treatment department that provides up to date treatment information and a free bi-monthly publication, Medical Alert (Available in English and Spanish.)
Phone:202-898-0414, fax: 202-789-2222.
Web site: http://www.thecure.com.

National Brain Tumor Foundation
785 Market St., Suite 1600, San Francisco, CA 94103.
Provides a variety of support and education services for patients and their families, including booklets, newsletters, support group listings, and assistance starting new groups, and a toll-free tumor information line.
Phone: 415-284-0208 Information Line: 800-934-CURE.

National Cancer Institute
9000 Rockville Pike, 31 Center Dr. - MSC 2580, Bethesda, MD 20892.
The NCI is the largest component of the National Institutes of Health. It coordinates a national research program on cancer cause and prevention, detection and diagnosis, and treatment. In addition, it provides information about cancer to patients, the public at large, and health professionals.
Phone: 301-496-5583 or 800-422-6237 TTY: 800-332-8615. 

National Coalition for Cancer Survivorship
1010 Wayne Avenue, Suite 505, Silver Spring, MD 20910.
NCCS offers information on employment and insurance issues and provides referrals to sources of support and information.
Phone: 301-650-8868. 

National Hospice Organization
1901 N. Moore St., Suite 901, Arlington, VA 22209.
NHO provides referral services to link individuals with hospices in their local communities, and various educational programs.
Phone: 703-243-5900 Web site: http://www.nho.org

The National Institute on Aging
NIA promotes healthy aging by conducting and supporting
biomedical, social, and behavioral research and public
education.

National Kidney Foundation
30 East 33rd Street, New York, NY 10016.
Supports research projects and sponsors community programs in treatment, service, education and prevention of diseases of the kidney and urinary tract.
Phone: 800-622-9010 Web site: http://www.kidney.org.

National Parkinson Foundation
1501 NW 9th Ave., Miami, FL 33136.
Committed to finding the cause and cure for Parkinson’s disease and other allied neurological disorders through research, to provide diagnostic and therapeutic services, to improve the quality of life for patients and caregivers, and to educate people about Parkinson’s disease.
Phone: 800-327-4545

National Stroke Association
96 Inverness Drive East, Suite 1, Englewood, CO 80112-5112.
Dedicated entirely to the prevention, treatment and research of stroke, and support for stroke victims and their caregivers.
Phone: 303-649-9299 Web site: http://www.stroke.org.

The Never-Ending Squirrel Tale
PO Box 1562, Columbia, MD 21044-0562.
Practical tips and encouragement for the parents of kids with cancer.
Web site: http://www.squirreltales.com

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Tragedy Assistance Program for Survivors
2001 S Street, NW, Suite 300, Washington, DC 20009.
TAPS provides services who have lost a loved one in the line of military duty, through peer support, crisis intervention (on-call 24 hours per day), case workers and grief counseling referrals to help families and military personnel cope.
Phone: 800-959-TAPS. E-mail: TAPSHQ@aol.com.

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Widowed Persons Service
4270 Chicago Drive SW, Grandville, MI 49418.
A self-help support group for men and women who have experienced the death of a spouse, offering day and evening meetings, seminars, social activities and public education of the experience of being widowed.
Phone: 616-538-0101.

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