Links
2720 River Road, Suite 146, Des Plaines, IL 60018
(800) 886-2282 or (847) 827-9910
The American Brain Tumor Association (ABTA) is an independent, not-for-profit organization founded in 1973. Services include over 20 publications which address brain tumors, their treatment, and coping with the disease; nationwide resource listings of brain tumor support groups and physicians offering investigative treatments; Connections pen-pal program; a national biennial brain tumor symposium for patients and their families; and free social service consultations. ABTA also sponsors regional Town Hall meetings across the country which focus on state-of-the-art treatment options. A tri-annual newsletter, the Message Line, describes those research advances as well as other ABTA activities. Services are provided free to patients and their families.
ALS Association National Office
27001 Agoura Road, Suite 150, Calabasas Hills, CA 91301
(818) 880-9007
Patient
Hotline:(800) 782-4747
The Amyotrophic Lateral Sclerosis (ALS) Association is dedicated to the
fight against ALS, commonly referred to as Lou Gehrig's disease. The
Association is a national information resource on ALS, funding research
and providing referrals for counseling, training and support.
The Alzheimer's Association
919 N. Michigan Avenue, Suite 1000, Chicago, IL 60611-1676
(800) 272-3900
The Alzheimer's Association is the only national voluntary organization
dedicated to conquering Alzheimer's disease through research, and
through providing education and support to people with Alzheimer's
disease, their families, and caregivers. The association sends out
general information about the disease and caregiving responsibilities
and refers callers to their local chapter where they can get support
group information and find out about resources in their area.
American Association on
Mental Retardation (AAMR)
444 North Capitol Street, NW, Suite 846, Washington, DC 20001
(800) 424-3688 or (202) 387-1968
The AAMR is a professional organization that advances the knowledge and
skills of individuals in the field of mental retardation and related
developmental disabilities through the exchange of information and
ideas. The Association strives to enhance the life opportunities of
people with mental retardation and their families, and promote public
policies, research and services.
American
Liver Foundation
1425 Pompton Avenue, Cedar Grove, NJ 07009
(800) 223-0179
A national non-profit organization dedicated to preventing, treating,
and curing hepatitis and other liver and gallbladder diseases through
research and education.
American
Academy of Hospice & Palliative Medicine
The American Academy of Hospice & Palliative Medicine is the only
organization in the United States for physicians dedicated to the
advancement of hospice/palliative medicine, its practice, research and
education.
American Cancer
Society
1599 Clifton Road, NE, Atlanta, GA 30329-4251
(800) ACS-2345
The American Cancer Society is the nationwide, community-based voluntary
health organization dedicated to eliminating cancer as a major health
problem by preventing cancer, saving lives, and diminishing suffering
from cancer through research, education, advocacy, and service.
American Heart
Association
7272 Greenville Avenue, Dallas, TX 75231
(214) 373-6300 or (800)AHA-USA1 to be connected to closest affiliate in
area
The American Heart Association is one of the world's premier health
organizations committed to reducing disability and death from
cardiovascular diseases and stroke.
Leukemia Society of America
600 Third Ave., New York, NY 10016
(212) 573-8484
Voluntary non-profit health organization to cure leukemia and it's related cancers - lymphoma, multiple myeloma and Hodgkin's disease - and improve the quality of life of patients and their families.
National Kidney Foundation
30 East 33rd St., New York, NY 10016
(800) 622-9010 or (212) 889-2210
The National Kidney Foundation seeks the means for the prevention of diseases
of the kidney and urinary tract, while at the same time ensuring that those
now suffering from these diseases receive the finest possible care. The
Foundation supports research projects and sponsors a wide variety of
community programs in treatment, service, education and prevention.
National Parkinson
Foundation
1501 NW 9th Ave., Bob Hope Road, Miami, FL 33136
(800) 327-4545
The National Parkinson Foundation's mission is fourfold: to find 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.
National Stroke
Association
96 Inverness Dr. East, Suite 1, Englewood, CO 80112-5112
(800) STROKES (787-6537) or (303) 649-9299
National Stroke Association is the only national non-profit organization
dedicating 100 percent of its resources to stroke, including prevention,
research, treatment and support for stroke survivors and caregivers.
American College of
Physicians Home Care Guide for Advanced Cancer
For family, friends, and hospice workers caring for persons with advanced
cancer at home, when quality of life is the primary goal. The purpose of the HNPA is
to exchange information, experiences, and ideas; to promote understanding of
the specialties of hospice and palliative nursing; and to study and promote
hospice and palliative nursing research.
On Our Own Terms
In the autumn of 2000, a four-part PBS series from a team of
award-winning journalists led by Bill and Judith Moyers brought to
television an unprecedented report on end-of-life issues facing
Americans. The series will be accompanied by an extensive outreach,
education, and Web campaign.
Based on two years of research, ON OUR OWN TERMS: MOYERS ON DYING
goes to the front lines of the movement to improve end-of-life care to
explore the best models for change. From interviews across the country,
Moyers will report remarkable human stories of the dying, their
families, and their caregivers, as they struggle to balance medical
intervention with comfort and humanity at the end of life.
FAMILY RESOURCES
AIDS
Information Network
1211 Chestnut Street, 7th Floor, Philadelphia, PA 19107
(215) 575-1110, Library extension 131
AIDS Information Network has projects related to education and
prevention of HIV/AIDS and maintains a comprehensive multi-media,
multi-lingual collection of over 100,000 items related to HIV/AIDS.
Information requests are answered by professional staff on site, or via
telephone, fax, mail or e-mail.
American Brain Tumor
Association
2720 River Road, Suite 146, Des Plaines, IL 60018
(800) 886-2282 or (847) 827-9910
The American Brain Tumor Association (ABTA) is an independent,
not-for-profit organization founded in 1973. Services include over 20
publications which address brain tumors, their treatment, and coping
with the disease; nationwide resource listings of brain tumor support
groups and physicians offering investigative treatments; Connections
pen-pal program; a national biennial brain tumor symposium for patients
and their families; and free social service consultations. ABTA also
sponsors regional Town Hall meetings across the country which focus on
state-of-the-art treatment options. A tri-annual newsletter, The Message
Line, describes those research advances as well as other ABTA activies.
Services are provided free to patients and their families.
ALS
Association National Office
27001 Agoura Road, Suite 150, Calabasas Hills, CA 91301
(818) 880-9007 Patient Hotline: (800) 782-4747
The Amyotrophic Lateral Sclerosis (ALS) Association is dedicated to the
fight against ALS, commonly referred to as Lou Gehrig's disease. The
Association is a national information resource on ALS, funding research
and providing referrals for counseling, training and support.
Alzheimer's
Association
919 N. Michigan Avenue, Suite 1000, Chicago, IL 60611-1676
(800) 272-3900
The Alzheimer's Association is the only national voluntary organization
dedicated to conquering Alzheimer's disease through research, and
through providing education and support to people with Alzheimer's
disease, their families, and caregivers. The association sends out
general information about the disease and caregiving responsibilities
and refers callers to their local chapter where they can get support
group information and find out about resources in their area.
American Association on
Mental Retardation (AAMR)
444 North Capitol Street, NW, Suite 846, Washington, DC 20001
(800) 424-3688 or (202) 387-1968
The AAMR is a professional organization that advances the knowledge and
skills of individuals in the field of mental retardation and related
developmental disabilities through the exchange of information and
ideas. The Association strives to enhance the life opportunities of
people with mental retardation and their families, and promote public
policies, research and services.
American
Liver Foundation
1425 Pompton Avenue, Cedar Grove, NJ 07009
(800) 223-0179
A national non-profit organization dedicated to preventing, treating,
and curing hepatitis and other liver and gallbladder diseases through
research and education.
American
Academy of Hospice & Palliative Medicine
The American Academy of Hospice & Palliative Medicine is the only
organization in the United States for physicians dedicated to the
advancement of hospice/palliative medicine, its' practice, research and
education.
American Cancer
Society
1599 Clifton Road, NE, Atlanta, GA 30329-4251
(800) ACS-2345
The American Cancer Society is the nationwide, community-based voluntary
health organization dedicated to eliminating cancer as a major health
problem by preventing cancer, saving lives, and diminishing suffering
from cancer through research, education, advocacy, and service.
American Association of
Retired Persons (AARP)
601 E Street, NW, Washington, DC 20049
(202) 434-2277
AARP is the nation's leading organization for people 50 and older. AARP
serves their needs through information and education, advocacy, and
community services provided by a network of local chapters and
experienced volunteers throughout the country. The organization also
offers members a wide range of special benefits and services, including
Modern Maturity magazine and the monthly AARP Bulletin.
Americans for
Better Care of the Dying
2175 K Street, NW, Suite 820, Washington, DC 20037
(202) 530-9864
Americans for Better Care of the Dying (ABCD) is a non-profit charity
dedicated to social, professional, and policy reform and education aimed
at improving services for patients with serious illness and their
families. ABCD aims to: enhance the experience of the last phase of life
for all Americans; advocate for the interests of patients and families;
improve communication between providers and patients; involve society in
end-of-life care; control pain and other symptoms; demand continuity in
service systems for the seriously ill; and limit the emotional and
financial toll on families.
American Heart
Association
7272 Greenville Avenue, Dallas, TX 75231
(214) 373-6300 or (800)AHA-USA1 to be connected to closest affiliate in
area
The American Heart Association is one of the world's premier health
organizations committed to reducing disability and death from
cardiovascular diseases and stroke.
Cancer Resources
Cancer Resources is an on-line guide to cancer-related information,
services and organizations. This is an insider's guide developed by
survivors, caregivers, professionals and volunteers who have all had their
lives touched by cancer.
Medical
Bill Paperwork Assistance
HCS provides assistance with managing medical bill and health insurance
paperwork for the elderly, patients with long-term illnesses, and the
overwhelmed. We provide relief from the demanding job of managing
paperwork from providers and insurance companies for families who are
caring for an ill member.
Hospice Foundation of America
Hospice Foundation of America is a not-for-profit
organization that provides leadership in the development and application of
hospice and its philosophy of care. Through programs of professional
development, research, public education and information, Hospice Foundation
of America assists those who cope either personally or professionally with
terminal illness, death, and the process of grief.
International Association for
Hospice and Palliative Care
Sharing information on hospice and palliative care around the world.
Leukemia Society of
America
600 Third Ave., New York, NY 10016
(212) 573-8484
Voluntary non-profit health organization to: cure leukemia and it's related
cancers - lymphoma, multiple myeloma and Hodgkin's disease - and improve the
quality of life of patients and their families.
National Kidney Foundation
30 East 33rd St., New York, NY 10016
(800) 622-9010 or (212) 889-2210
The National Kidney Foundation seeks the means to the prevention of diseases
of the kidney and urinary tract, while at the same time ensuring that those
now suffering from these diseases receive the finest possible care. The
Foundation supports research projects and sponsors a wide variety of
community programs in treatment, service, education and prevention.
National Parkinson
Foundation
1501 NW 9th Ave., Bob Hope Road, Miami, FL 33136
(800) 327-4545
The National Parkinson Foundation's mission is fourfold: to find 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.
National Stroke
Association
96 Inverness Dr. East, Suite 1, Englewood, CO 80112-5112
(800) STROKES (787-6537) or (303) 649-9299
National Stroke Association is the only national non-profit organization
dedicating 100 percent of its resources to stroke, including prevention,
research, treatment and support for stroke survivors and caregivers.
National
Hospice and Palliative Care Organization
1901 N. Moore Street, Suite 901, Arlington, VA 22209
(703) 243-5900
The National Hospice Organization (NHPCO) is the oldest and largest public
benefit organization in the US devoted exclusively to hospice care. NHPCO
operates the Hospice Helpline (1-800-658-8898) to provide the general public
and healthcare professionals with information about hospice care,
reimbursement sources, as well as referrals to local hospice programs
throughout the US NHPCO publishes a variety of brochures on hospice care,
grief in the workplace, and bereavement.
On Our Own Terms
In the autumn of 2000, a four-part PBS series from a team of award-winning journalists led by Bill and Judith Moyers brought to television an unprecedented report on end-of-life issues facing Americans. The series will be accompanied by an extensive outreach, education, and Web campaign. Based on two years of research, ON OUR OWN TERMS: MOYERS ON DYING goes to the front lines of the movement to improve end-of-life care to explore the best models for change. From interviews across the country, Moyers will report remarkable human stories of the dying, their families, and their caregivers, as they struggle to balance medical intervention with comfort and humanity at the end of life.
Final Thoughts
Your web resource for estate and end of life planning.
Hospice Foundation of America
Hospice Foundation of America is a not-for-profit
organization that provides leadership in the development and application of
hospice and its philosophy of care. Through programs of professional
development, research, public education and information, Hospice Foundation
of America assists those who cope either personally or professionally with
terminal illness, death, and the process of grief.
American College of Physicians Home Care Guide for Advanced Cancer
For family, friends, and hospice workers caring for persons with advanced cancer at home, when quality of life is the primary goal. The purpose of the HNPA is to exchange information, experiences, and ideas; to promote understanding of the specialties of hospice and palliative nursing; and to study and promote hospice and palliative nursing research.
American Society of Psychosocial & Behavioral Oncology/AIDS (ASPBOA)
The mission of the American
Society for Psychosocial and Behavioral Oncology/AIDS (ASPBOA)
is to promote the psychological, social, and physical well being of patients
with cancer, AIDS and allied diseases and their families at all stages of
disease and survivorship through clinical care, education, research, and
advocacy. The Society's membership represents fields such as
psychiatry, social work, psychology, nursing and chaplaincy.
Hospice
and Palliative Nurses Association
The purpose of the HPNA is
to exchange information, experiences, and ideas; to promote understanding of
the specialties of hospice and palliative nursing; and to study and promote
hospice and palliative nursing research.
On Our Own Terms
In the autumn of 2000, a four-part PBS series from a team of
award-winning journalists led by Bill and Judith Moyers will bring to
television an unprecedented report on end-of-life issues facing
Americans. The series will be accompanied by an extensive outreach,
education, and Web campaign.
Based on two years of research, ON OUR OWN TERMS: MOYERS ON DYING goes to the front lines of the movement to improve end-of-life care to explore the best models for change. From interviews across the country, Moyers will report remarkable human stories of the dying, their families, and their caregivers, as they struggle to balance medical intervention with comfort and humanity at the end of life.
Aging with
Dignity -- Five Wishes
Five Wishes is a document that helps you express how you
want to be treated if you are seriously ill and unable to speak for
yourself. It is unique among all other living will and health agent
forms because it looks to all of a person's needs: Medical, personal,
emotional and spiritual. Five Wishes also encourages discussing your
wishes with your family and physician.
Compassion in Dying
Compassion In Dying Federation provides national leadership for client
service, legal advocacy and public education to improve pain and symptom
management, increase patient empowerment and self-determination and expand
end-of-life choices to include aid-in-dying for terminally ill, mentally
competent adults.
Choice in Dying -- Advance Directives
Choice In Dying,
the inventor of living wills in 1967, is dedicated to fostering
communication about complex end-of-life decisions. The nonprofit
organization provides advance directives, counsels patients and families,
trains professionals, advocates for improved laws, and offers a range of
publications and services.
Journey of Hearts
- A Healing Place in CyberSpaceTM
This website is for anyone who has ever
experienced a loss or significant
life changes. It is well-known that losses and changes can impact a
person's life forever. The losses referred to on this site can be acute or
long-standing and can result in feelings of grief, stress, depression,
loneliness or helplessness.
Last
Acts
Last Acts is a call-to-action campaign dedicated to improving end-of-life
care through sharing of ideas and solutions by professional caregivers,
institutions and individuals.
World Wide Cemetery
When a person we love or are close to dies, the desire to communicate our
loss is both natural and strong. We use the media-all forms of print, as
well as radio and television-to notify others of a loved one's
passing. Monuments in the World Wide Cemetery allow people to share
the lives of their loved ones in ways that traditional printed death
announcements or stone inscriptions cannot. Photographs, moving images and
even sounds can be included with a monument.
An online children's memorial dedicated to raising awareness to childhood diseases. Those that have lost a child may have a star added in their memory for free.