Agencies
This list is divided into two sections: Organizations Represented by People on the Advisory Board and Other Agencies Committed to End-of-life Care. Each list is organized alphabetically.
Organizations Represented by People on the Advisory Board
- Center for Aging, NYS OMRDD
- Center for Disabilities Studies and Community Inclusion, University of Southern California
- Center for Excellence in Aging Services, University at Albany
- Center for Intellectual Disabilities, University at Albany
- Center for Life’s Journeys
- Center for Practical Bioethics
- Center for Rights of Parents with Disabilities of the Colorado Cross-Disability Coalition
- College of New Rochelle
- Creative Living Options, Inc.
- Hospice Foundation of America
- InLeadS
- Marist College
- Massachusetts Department of Mental Retardation
- National Hospice and Palliative Care Organization
- New Jersey Health Decisions
- NYSARC, Inc.
- Oklahoma Department of Human Services, Aging Services Division
- Oklahoma Department of Human Services, Developmental Disabilities Services Division
- Orange Grove Center, Chattanooga, TN
- ResCare, Inc.
- Volunteers of America of Oklahoma
- Volunteers of America, Inc.
Other Agencies Committed to End-of-life Care
AARP: American Association of Retired Persons
Many brochures for widowed persons and a guide, “Customs of Bereavement,” for cross-cultural assistance.
601 E Street, NW
Washington, DC 20049
Aging in America
Provides information on everything related to being over 60. Recommendations and referrals to such things as meals on wheels, housekeeping services, personal care and entitlements.
1500 Pelham Parkway South
Bronx, NY 10461
(718) 824-4004
AIDS Hotline
Provides basic information about transmission. Referrals to medical services, counseling and support groups.
(800) 342-AIDS
ALS Association
Provides information and educational materials about ALS (Lou Gehrig's Disease). Referrals to physicians, support groups and drug trials.
27001 Agoura Road, Suite 150
Calabafafes Hills, CA 91301-5104
(800) 782-4747
Alzheimer's Disease and Related Disorders Association
Provides general information on the disease. Referrals to local chapters for specific services.
919 N. Michigan Avenue, Suite 100
Chicago, IL 60611
(800) 272-3900
American Geriatrics Society
Leader in and advocate for programs in patient care, aging research, professional and public education and public policy.
770 Lexington Avenue
New York, NY 10021
(212) 308-1414 Fax: (212) 832-8646
Americans for Better Care of the Dying
2175 K Street, NW, Suite ;820
Washington, DC 20037
(202) 530-9864
ARC
Publications include list of materials and other resources on people with intellectual disabilities, dying, death and grief support.
1010 Wayne Avenue, Suite 650
Silver Springs, ME 20910
(301) 565-3842
Call Choice In Dying
We have trained counselors who can help you navigate the health care system and sort through the information you are receiving from health care providers about end-of-life treatment decisions. If you hear something that is confusing at (800) 989-WILL. We can help you understand the issues important to your situation.
Cancer Information Service
Answer any question related to cancer and cancer treatment. Referrals to hospice, home care and support groups.
19 offices across the country
(800) 4-CANCER
Center to Improve Care of the Dying (CCID)
An interdisciplinary team engaged in research, advocacy and education activities to improve the care of the dying and their families.
George Washington University
Compassion in Dying
Advocates change in medical care for terminally ill people and insists that meaningful reform must include legislation of assisted dying.
The EPEC Project (Education for Physicians on End-Of-Life Care)
Supported by a grant from the Robert Wood Johnson Foundation, the EPEC Project is designed to educate physicians about end-of-life care. The website proves a core curriculum, an extensive resource guide of books and audiovisuals.
Institute for Ethics
American Medical Association
515 North State Street
Chicago, IL 60610
(312) 464-4979
Family Caregiver Alliance
Resource center with online caregiver group, clearinghouse, research and publications for caregivers and those working with them.
690 Market Street, Suite 600
San Francisco, CA 94104
(415) 434-3388
Growth House
A search engine with vast resources on key issues in terminal illness, hospice, dying, death, grief and bereavement.
Hospicelink
Provides general information on Hospice Care. Referrals to hospice across the country.
(800) 331-1620
Hospice Education Institute
190 Westbrook Road
Essex, Conn 06475
Hospice Foundation of America
2001 South Street, NW, Suite 300
Washington, DC 20009
(800) 854-3402
Hospice Net
Resources for patients, caregivers, survivors. Provides links and provides information on rules that govern Medicare coverage of and payment for hospice care.
401 Bowling Avenue, Suite 51
Nashville, TN 37205
Last Acts Partnership
A national interdisciplinary coalition representing many organizations and providing education and advocacy for improved care of dying people. Extensive resources directory.
The Living Bank
Provides information on organ donation and a registry of people who wish to donate organs.
(800) 528-2971
National Association for Home Care and Hospice
Comprehensive database of home care and hospice agencies and information on how to choose a provider.
228 South Street, SE
Washington, DC 20005
(202) 547-7424
National Association of Social Workers
Referrals to professional social workers nationwide.
750 1st Street, NE, Suite 700
Washington, DC 20002
(800) 638-8799 ext. 555
National Center for Death Education, Mount Ida College
Resource directory of books, audiovisual materials.
777 Pelham Street
Newtom, MA 02159
(617) 928-4649
National Death Centre
Ideas for supporting dying people at home and their careers and helping them to arrange funerals.
20 Heber Road
London, N@2 6AA UK
National Family Caregivers Association (NFA)
Supports caregivers and offers bereavement programs.
10605 Concord Street, Suite 501
Kingston, MD 20895
National Hospice and Palliative Care Organization
Includes the full report of the success of the Medicare hospice benefit, recent articles, an explanation and definition of trauma/disaster services related to hospice care and the agencies that supply them, four grief and bereavement guides, and information about NHPCO.
1700 Diagonal Rd. Suite 625
Alexandria, VA 22314
Hospice Helpline (800) 658-8898
National Kidney Foundation
Provides general information about kidney and urological disease as well as information on how to become an organ donor and free organ donor cards. Referrals to local affiliates for services.
30 E. 33rd Street
New York, NY 10016
(800) 622-9010
National Self-Help Clearinghouse
Referrals to all kinds of support groups nationwide.
(973) 625-7101
Project on Death in America
Open Society Institute
Extensive resource directories of agencies, services, publications and facts.
400 West 59th Street
New York, NY 10019
Zen Hospice Project
Links, extensive reading list, articles.
San Francisco

