Medical
& Other Resources
Alphabetically A -
D
Journey
of Hearts
A Healing
Place in CyberSpaceTM
Resources
Alphabetical A
- D
This is a list of Medical Resources
compiled from many sources, but the areas I have selected in some way relate
to the topic of loss, or resources for helping to deal with the loss. Some
were suggested by colleagues or members of the Alliance, others I
have found in medical journals or other medical sources.
Those resources selected are
ones with good reliable information, from legitimate, reputable sources.
In particular we have looked for comprehensive resources and those with
good references lists for a particular area of interest, with the eye for
both the general public and the medical profession. In some cases, those
who have lived the loss are the best experts on the subject, so these sites
have also been included.
The links and information resources
are provided to allow people to obtain useful and more accurate information
on a variety of subjects, to help them understand their loss. Disclaimer.
Since the topic of loss is so
vast the listing of these resources is also vast and will be expanding
as we discover more resources to include. If you know of a good resource
(or discover a broken link) to be included on our listing please email
us at:
e-mail@
kirstimd.com
You may want to use the Search Engine
on the Medical Index Page for a specific request
Aging, Retirement
& Elder Care
American Association of Retired
Persons
The National Council on the Aging,
Inc. (NCOA) (800) 375-1014
NCOA, 409 Third Street SW, Second
Floor, Washington DC, 20024
An Association of organizations
and individuals committed to promoting the dignity, self determination,
well-being, and contribution of older persons. It serves as a national
resource for service providers and consumers. Special areas of interest
are community based programs, including senior centers and adult day services.
http://www.ncoa.org
or http://scooby.mrl.nyu.edu:8000/
National Institute on Aging http://www.nih.gov/nia/
The National Institute on Aging
(NIA) is one of the National Institutes of Health, the principal biomedical
research agency of the United States Government. The NIA promotes healthy
aging by conducting and supporting biomedical, social, and behavioral research
and public education.
Seniors-Site.com
This site is dedicated to provide
a unique, informative, interesting, and entertaining Internet website for:
senior citizens, adults 50+, your children, grandchildren, and caregivers.
http://seniors-site.com/
Administration on Aging (AOA) Department
of Health and Human Services
Eldercare Locator (800) 677-1116
http://www.aoa.dhhs.gov/aoa/pages/loctrnew.html
A nationwide directory assistance
service designed to help older persons and caregivers locate local resources.
Hours 9 am - 11 pm EST. You will be referred to the appropriate area agency
on aging.
See Compassionate
Touch Resource listed below.
AIDS/HIV
Center For Disease Control
http://www.cdc.gov
NIH (National Institute of Health)
AIDS
Shanti, general information about
AIDS/HIV
Kairos at Shanti, Support group
for caregivers of those with AIDS/HIV
Growth House (Hospice-Bereavement-HIV
Links-Free Home Pages)
National AIDS Hotline
From the American Social Health
Association
English (24 hours, 7 days)
1-800-342-2437
Spanish (8 A.M. - 2 A.M. Eastern
Time, 7 days) 1-800-344-7432
TTY Services for the Deaf
M-F, 10 A.M. - 10 P.M., Eastern
Time
1-800-243-7889
ASHA is a nonprofit ogranization
dedicated to the prevention and control of all sexually transmitted diseases.
http://www.sunsite.unc.edu/ASHA/
WWW Virtual Library-AIDS
National Institute of Allergy and
Infectious Disease, Division of Acquired Immunodeficiency Syndrome
Alcoholism
Alcoholics Anonymous
(212) 870-3400
A.A. World Services, Inc., P.O.
Box 459, New York, NY 10163 - .Since its founding in 1935, Alcoholics Anonymous
has grown to include more than 2,000,000 members, of recovered alcoholics.
These members meet in local groups to provide support. Based on the now
infamous 12 step recovery program.
This site recommends checking
in the phone book for the nearest chapter.
http://www.alcoholics-anonymous.org/
Another Empty Bottle
Another Empty Bottle is a site
for the friends, family and alcoholics. The site contains a weekly column
of news, information and fun; an extensive listing of resources about alcoholism;
links to sites on alcoholism, depression, domestic abuse, and more; help
groups and hotlines; over 100 personal stories submitted by visitors; a
touching, yet-informative children's section; a recovery site building
shop for those wishing to create their own recovery web site; a listing
of chat rooms and meeting schedules; a thriving discussion area for visitors
to post questions or comments; and more!
Another Empty Bottle believes
in giving all the options to its visitors. Listing are included for both
religious and non-religious, 12-step and non 12-step recovery resources.
http://www.alcoholismhelp.com
National GRADD (Group Rides and
Designated Drivers) (407) 671-2409
PO BOX 2116, Goldenrod, FL
32733-2116
The mission of National GRADD
is to prevent drunken driving tragedies and to save lives among college
communities by building and supporting a national network of collegiate
safe ride programs.
http://saferide.org
The National Organization on Fetal
Alcohol Syndrome (NOFAS) (202) 785-4585
418 'C' Street North East Washington,
DC 20002
NOFAS is committed to raising
public awareness of Fetal Alcohol Syndrome (The leading known cause
of mental retardation),and to developing and implementing
innovative ideas in prevention,
education, intervention, and advocacy in communities throughout the nation.
The organization was founded in 1990 for the purpose of eliminating birth
defects caused by alcohol consumption during pregnancy and improving the
quality of life for those individuals and families affected.
http://www.nofas.org/
Allergy
and Immunology
Allergy and Asthma Network/Mothers
of Asthmatics, Inc. AANMA (800) 878-4403
American Academy of Allergy,
Asthma and Immunology (800) 822-2762
American College of Allergy, Asthma
& Immunology (800) 842-7777
National Institute of Allergy and
Infectious Disease
Asthma and Allergy Foundation of
America (AAFA)
ALS (Amyotrophic
Lateral Sclerosis, Lou Gehrig's disease)
ALS Association
800-782-4747
ALS Association National Office
27001 Agoura Road, Suite 150
Calabasas Hills, CA 91301-5104
The ALS Association seeks to
promote awareness and understanding of ALS and the work of The ALS Association
by providing up-to-date information. They provide
education materials to the ALS community, the patients and families, caregivers,
researchers and members in the health care fields.
ALS (amyotrophic lateral sclerosis)
is a fatal neurodegenerative disease.
http://www.alsa.org
ZazAngels 1-800-672-8857
ALS Association, Greater New
York Chapter 40 Wall St. New York, NY 10005
This organization was created
by Actor Michael Zaslow, his wife, Susan Hufford, fellow actor, Brynn
Thayer and The ALS Association's Greater New York Chapter,to generate much-needed
funds for ALS research.
This information is included
in memory of Michael Zaslow who December 6, 1998.
http://www.zazangels.com
Ride for Life
The mission of Ride for Life
is to raise pubic awareness of Amyotropic Lateral Sclerosis, aid research
in finding a cure, and provide the ALS community with the latest ALS related
news, information and inspiration.
http://www.rideforlife.com
Alternative
& Complementary Medicine
Office of Alternative and Complementary
Medicine (OAM) NIH
MedWeb
http://www.gen.emory.edu/MEDWEB/keyword/alternative_medicine.html
Chiropractic Federation of Chiropractic
Licensing Boards (970) 356-3500
Homeopathy National Center for Homeopathy
(703) 548-7790
Massage Therapy National Certification
Board for Massage and Bodywork 800-292-0664
Naturopathy American Association
of Naturopathic Physicians (AANP) (206) 328-8510
Alzheimer's
The Alzheimer's Association
(800) 272-3900 (312) 335- 8700
919 North Michigan Ave., Chicago,
Il 60611
A National non-profit organization
that provides a wide range of information and services to patients with
Alzheimer's disease, their caregivers, friends and families.
http://www.alz.org/
For an excellent resource for Caretakers
from the Alzheimer's Association
Alzheimer's Disease Education and
Referral ADEAR (800) 438-4380
P.O. Box Silver Springs, MD
20907-8250
The ADEAR Center is a service
of the National Institute on Aging (NIA). The NIA is one of the
National Institutes of Health,
under the U.S. Department of Health and Human Services.
http://www.alzheimers.org/adear
A Year To Remember - A Website for
Alzheimer's Disease
This site is by a daughter and
a caregiver for a person with Alzheimer's. Barbara Parris created the site
to share information about this disease because a knowledgable caregiver
is essential to being a good caregiver. The information is also for general
use, because almost everyone knows someone who has Alzheimer's.
http://home.hiwaay.net/~bparris
National Family Caregivers Association
(NFCA) 1 800 896 3650
10605 Concord St., Suite 501
Kensington, MD 20895-2504
NFCA is the a charitable organization
dedicated to making life better for America's family caregivers. There
are more than 25 million people who find themselves in a caregiving role.
And the numbers are growing daily. Family caregivers focus on their loved
one's needs. NFCA focuses on family caregivers.
http://www.nfcacares.org/
Amputee
American Amputee Foundation
(501) 666-2523 (Voice)
P.O. Box 250218 Little Rock,
AR 72225
The American Amputee Foundation
Inc., (AAF) began in 1975 as a national information clearinghouse and referral
center, serving primarily amputees and their families.
Amputee Coalition of America 800-355-8772
or 888 AMPKNOW
900 E. Hill Avenue, Suite 285
Knoxville, TN 37915
National Limb Loss Information
Center in Knoxville, Tenn. An Ogranization that provides outreach,
education and empowerment for those with limb loss.
email to: ACAONE@aol.com
Western Amputee Support Alliance
P. O. Box 4218, Culver City,
CA 90231-4218
The Western Amputee Support
Alliance is an informal association of amputee support groups located in
the western United States that have voluntarily banded together for the
specific purposes of:
1. Publicizing the services
they offer to the amputee community
2. Disseminating information
on whom to contact and how
3. Publishing informational
material of interest to those with amputations.
http://www.usinter.net/wasa/index.html
Amyotrophic Lateral Sclerosis (See
ALS)
Anxiety
Disorder
Anxiety Disorders Association
of America (301) 231-9350
National Anxiety Foundation
(606) 272-7166
NMHA National Mental Health Association
( 800) 969-6642
National Institute of Mental Health
Anxiety/Panic Attack Resource Site
This site from someone who has
suffered from Anxiety and Panic Attacks for to those who suffer from Anxiety/Panic
Attacks. This site offers information on signs and symptoms, medications
commonly prescribed and information for understanding panic attacks and
agoraphobia. The site provides a chat channel people to use. Beautiful
imagery with A Rose in the Darkness.
http://www.angelfire.com/co/tapirchat
Art Therapy
American Art Therapy Association,
Inc. (847) 949-6064 FAX: (847) 566-4580
1202 Allanson Road, Mundelein,
Illinois 60060
The American Art Therapy Association
is an organization of professionals dedicated to the belief that the creative
process involved in the making of art is healing and life-enhancing.
Its mission is to serve its
members and the general public by providing standards of professional competence,
and developing and promoting knowledge in, and of, the field of art therapy.
http://www.louisville.edu/groups/aata-www/
Arts and Healing Network
FAX: (415) 771-3696
3450 Sacramento St. Box 612,
San Francisco, CA 94118
The Arts and Healing Network
is "dedicated to celebrating the connection between arts and healing."
The focus of their website is to serves as an international resource and
exchange for anyone interested in the healing potential of art, especially
environmentalists, social activists, artists, health care practitioners,
and those challenged by illness.
http://www.artheals.org
Confronting Cancer Through Art
This unique exhibition and Virtual
Gallery, from University of Pennsylvania Cancer Center and the Arthur Ross
Gallery, gives vision and voice to the experiences of all those who have
confronted cancer. This juried exhibition includes nearly 200 works by
112 artists. Many of the artists are cancer survivors who used their art
as a means of coping with or expressing their feelings about their illness.
Others created their works in response to the illness of a family member
or friend.
http://www.upenn.edu/ARG/CCTA/
Survivors Art Foundation - Healing
through Art ... Art through Healing
Survivors Art Foundation P.O.
Box 383 Westhampton, NY 11977
This non-profit organization
is dedicated to encourage healing through the arts and committed to empowering
Visual, Literary and Performing Artists with effective expressive outlets,
via Web Gallery, National Exhibitions, Outreach Programs and Publications.
Our goals are to provide entertainment, education, exposure to the arts,
and raising public awareness, while mainstreaming trauma survivors with
physical and mental disabilities into the arts.
http://www.survivorsartfoundation.org/
Arthritis
Arthritis Foundation (800)
283-7800
1330 West Peachtree Street Atlanta,
Georgia 30309
National, nonprofit, voluntary
health organization working toward the cure and prevention of arthritis
and realte diseasea and a better life for those affected.
http://www.arthritis.org
American Juvenile Arthritis Organization
American College of Rheumatology
404-633-3777
60 Exec. Park S., Ste. 150 Atlanta,
GA 30329
A Professional organization
of rheumatologists and other health care professionals. Publishes the monthly
journal Arthritis & Rheumatism
http://www.rheumatology.org/
Asthma
Asthma and Allergy Foundation
of America (AAFA) (800)-7 ASTHMA
Allergy and Asthma Network/Mothers
of Asthmatics, Inc. AANMA (800) 878-4403
American Academy of Allergy,
Asthma and Immunology (800) 822-2762
American College of Allergy, Asthma
& Immunology (800) 842-7777
Attention
Deficit Disorder
Children and Adults with Attention
Deficit Disorders C.H.A.D.D. (800) 233-4050
499 Northwest 70th Avenue, Suite
101 Plantation, Florida 33317
Publishes brochures and a quarterly
newsletter on the topic. Also Maintains a support group network for adults
with ADD and parents of children with ADD.
http://www.chadd.org
National Attention Deficit Disorder
Association 800-487-2282
9930 Johnnycake Ridge Road,
Suite 3E, Mentor, OH 44060
NADDA is an organization built
around the needs of adults and young adults with ADD and ADHD. Their goal
is to serve individuals with ADD, as well as those who love, live with,
teach, counsel, and treat those who do.Focuses on the needs of adults with
ADD, such as work, relationship, higher education and legal issues.
http://www.add.org
Autism
Autism Society of America
( 800)-3AUTISM (301)-657-0881
7910 Woodmont Ave, Suite 650,
Bethesda, MD 20814-3015
The mission of the Autism Society
of America is to promote lifelong access and opportunities for persons
within the autism spectrum and their families, to be fully included, participating
members of their communities through advocacy, public awareness, education,
and research related to autism.
http://www.autism-society.org/
Center for the Study of Autism (CSA)
and A.U.T.I.S.M.
Center for the Study of Autism,
P.O. Box 4538 Salem, OR 97302, U.S.A.
Provides provides information
about autism to parents and professionals, and conducts research on the
efficacy of various therapeutic interventions from one of the research
centers for autism.
http://www.autism.org
Batten
Disease
Batten Disease Support
and Research Association - (BDSRA)
The BDSRA Mission is be an international
support and research networking organization for families of children
and young adults with an inherited neurological degenerative disorder known
as Batten Disease, an inherited, degenerative neurological disease known
as Neuronal Ceroid Lipofuscinoses.
http://www.bdsra.org/index.htm
Bereavement
(see also Grief, Loss
of Child)
WEBster
A website designed by a pediatric
nurse to help patients and families confront death and dying and other
difficult issues. The site includes links to many different areas relating
to hospice, suicide, miscarriage, sudden infant death syndrome, grief in
children, organ donation and transplantation, domestic violence, funerals
and burials, and religious and cultural aspects of death. (Review
from Carrie Lybecker, RN of the American Journal of Nursing)
http://www.katsden.com/webster/index.html
Death and Dying Index
http://www.katsden.com/death/index.html
Growth House
The net's most extensive directory
of reviewed resources for end of life care. The web site is an international
gateway to resources for life-threatening illness and end of life issues.
Their primary mission is to improve the quality of compassionate care for
people who are dying through public education about hospice and home care,
palliative care, pain management, death with dignity, bereavement, and
related end of life topics. Growth House offers a free monthly
e-mail message with leads on new "best of the net" sites related to terminal
care and bereavement.
http://www.growthhouse.org
Grief Recovery Online (founded by)
Widows & Widowers
GROWW was founded by a group
of widows and widowers who understand that when a spouse dies, our husband
or wife, was also a son or a daughter, an aunt or an uncle, a brother or
a sister, a grandmother or a grandfather, a mother or a father and finally
a friend. The primary function and expertise of GROWW is the development
of bereavement support groups online in the format of “chat rooms," and
promotes Grief Recovery for ALL Bereaved.
http://www.groww.com/
Good Grief! For Those Who Have Lost
Loved Ones
This website was created by
a grieving woman who lost both her son and husband in a tornado. As with
Journey of Hearts, her hope is that by sharing the experience that others
may understand they are not alone in their grief. The site contains a collection
of Grief Links and Resources, as well as a Treasured Memories Memorial
Page, along with areas to Share the Grief.
http://www.geocities.com/Heartland/Valley/4464/
Crisis, Grief & Healing
One of the original Grief resources,
by Tom Golden, LCSW. This resource has been serving the on-line community
since February 1995.
The site includes a variety
of resources including 'A
Place to Honor Grief, a page dedicated to sharing the stories. Also
included a variety of threaded discussions.
http://www.webhealing.com/
Blindness
American Foundation for the
Blind 1-800-AFB-LINE (232-5463)
11 Penn Plaza Suite 300 New
York, NY 10001
A non-profit organization founded
in 1921 and recognized as Helen Keller's cause in the United States, the
American Foundation for the Blind (AFB) is a leading national resource
for people who are blind or visually impaired, the organizations that serve
them, and the general public.
http://www.afb.org/index.html
Brain Tumors
(See also Cancer Resources)
Meningiomas & Benign Brain
Tumors
This website contains information
regarding the treatment of brain, spine, and peripheral nerve tumors at
Massachusetts General Hospital. It includes information applicable to benign
brain tumors such as epidermoid, dermoid, hemangioblastoma, colloid cyst,
subependymal giant cell astrocytoma, pleomorphic xanthoastrocytoma, and
craniopharyngioma.
http://neurosurgery.mgh.harvard.edu/meninghp.htm
This site provides an extensive
list of Meningiomas & Benign Brain Tumor Information Links. http://neurosurgery.mgh.harvard.edu/BENIGNlk.htm
Malignant Brain Tumors & Neuro-Oncology
Resources
American Brain Tumor Association
(800) 886-2282
2720 River Road Des Plaines,
IL 60018
The American Brain Tumor Association
is a not-for-profit, independent organization dedicated to eliminating
brain tumors by funding and encouraging research; providing educational
materials and objective resource information to patients, their families,
and the medical professionals who treat them; promoting excellence in patient
care; advocating the investigation of research and treatment
approaches.
http://www.abta.org
A PRIMER OF BRAIN TUMORS: A
Patient's Reference Manual, Fifth Edition 1991 (on-line) ...in the hope
that through knowledge comes comfort and strength...
http://neurosurgery.mgh.harvard.edu/abta/primer.htm
A Primer of Brain Tumors, A
Patient's Reference Manual, Sixth Edition (This text version does not contain
the illustrations and diagrams, but can be ordered from ABTA). Also available
in Spanish.
http://www.abta.org/primer.htm
The Brain Tumor Society 1-800-770-TBTS
(8287)
84 Seattle St., Boston, MA 02134-1245
The Brain Tumor Society exists
to find a cure for brain tumors. It strives to improve the quality of life
of brain tumor patients and their families. It disseminates educational
information and provides access to psycho-social support. It raises funds
to advance carefully selected scientific research projects, improve clinical
care and find a cure. The Brain Tumor Society will be involved in support
issues to help patients and families better deal with the catastrophic
problem of a brain tumor.
http://www.tbts.org
Childhood Brain Tumor Foundation
(301) 515-2900
20312 Watkins Meadow Drive
Germantown, MD 20876
The Childhood Brain Tumor Foundation
was founded by families, friends and physicians of children with brain
tumors. Their mission is to raise funds for scientific research and heighten
public awareness of this most devastating disease and to improve prognosis
and quality of life for those that are affected by it.
http://www.monumental.com/cbtf/
T.H.E. (The Healing Exchange) BRAIN
TRUST 617-623-0066
Kendall Square Box 425743 Cambridge,
MA 02142-0014
This website was developed for
people to communicate about neurological disorders both on and off the
Internet.
Their nonprofit mission is to
provide, promote, and improve communication opportunities and tools for
people who are personally affected by or who professionally treat or study
localized neurological disorders and subsequent or related health care
concerns, and make the experience of neurological disorders (especially
brain tumors) less horrific by encouraging and enabling geographically
dispersed people to communicate. The site is designed to enable , encourage
and empower local and international exchange among Survivors, their
families and supporters, health
professionals and researchers.
Note: The organization will initially focus
on intracranial tumors and space occupying lesions, and will progress to
address other neurological conditions such as acquired brain injury, hydrocephalus,
dystonia etc. as soon as feasible.
http://www.braintrust.org/
Breast
Cancer
Y-Me National Breast Cancer
Organization (800) 221-2141
Provided information, education,
counseling and free wigs and prosthesis for women with financial need if
correct size is available.
Will ship by mail for a small
handling fee.
Y-Me Spanish (800) 986-9505
Information also available in
Spanish
http://www.y-me.org/
The Susan G. Komen Breast Cancer
Foundation (800) IM-AWARE
Volunteers work work through
local chapters and Race for the Cure events to further the Foundation's
mission of eradicating breast cancer.
http://www.komen.org/
BreastCancerinfo.com
Information on the site is provided
by the Susan G. Komen Breast Cancer Foundation. With all the news and issues
on breast health. Includes a series of pubications that addres specific
concerns of minority populations.
http://www.breastcancerinfo.com/
National Alliance of Breast Cancer
Organizations (800) 719-9154
A network of breast cancer organizations
that provides information, education, assistance and referral to anyone
with questions about breast cancer. The Organization also acts as a voice
for the interests and concerns of breast cancer survivors and women at
risk
http://www.nabco.org/
American Cancer Society (800) ACS-2345
Burn Survivors
American Burn Association 312-642-9260
or 800-548-2876
625 N. Michigan Avenue, Suite
1530 Chicago, IL 60611
The American Burn Association
and its members dedicate their efforts to the problems of burn injuries
and burn victims throughout the United States, Canada, and other countries.
Members of this international, multi-disciplinary organization of health
professionals provide care and rehabilitation to burn patients, conduct
burn-related research, educate burn team members, develop/implement burn
injury prevention programs, fight fires, and address the psychosocial needs
of burn victims.
http://ameriburn.org/home.htm
Alisa Ann Ruch Burn Foundation AARBF
(800) 242-BURN
3600 Ocean View Blvd., #1 Glendale,
CA 91208
The Alisa Ann Ruch Burn Foundation
derived its name and inspiration from an eight -year-old child, Alisa Ann,
who died from injuries sustained in a common backyard barbecue accident.
Founded in 1971, the Burn Foundation works in partnership with firefighters,
educators, and burn care professionals to develop innovative programs and
services. The website provides information and programs to help with Burn
Survivors including a summer camp.
http://www.aarbf.org/index.html
The Phoenix Society for Burn Survivors
(800) 888-BURN (2876) (616) 458-2773
2153 Wealthy Street SE #215
East Grand Rapids, Michigan 49506
The Phoenix Society is an international
non-profit self-help organization created
to uplift and inspire anyone
affected by burns through peer support, advocacy,
collaboration and education.
The Phoenix Society has been helping burn survivors and their families
cope with and overcome the unimaginable and difficult challenges they encounter
following a burn injury. This society is the nation's longest standing
and largest organization of burn survivors and care providers dedicated
to helping burn survivors and their families. Through individual
help, support and information their aim is to facilitate a successful rehabilitation
and reintegration into society.
The society takes its name from
the legendary bird of rare beauty that lives for 500 years
and is consumed by flames, yet
rises, reborn from its ashes, more brilliant than before.
http://www.phoenix-society.org
Firefighters Quest for Burn Survivors
(800)404-7972
1146 N. Central Ave. #398 Glendale,
CA 91202-2506
This non-profit organization
is dedicated to providing assistance to burn survivors their families,
burn centers and foundations through educational, financial and prevention
methods.
http://www.firefightersquest.org/
American Trauma Society (800)556-7890
8903 Presidential Parkway, Suite
512, Upper Marlboro, MD 20772
The American Trauma Society
is a nationwide, non-profit, voluntary organization dedicated to the prevention
of trauma and improvement of trauma care. The goals of this organization
are: to increase public awareness of the term "trauma" and the American
Trauma Society so that its impact is commonly understood, to initiate,
promote and/or coordinate (national research) prevention programs and activities
aimed at reducing the incidence and severity of trauma, and to advance
trauma care throughout the nation through advocacy for development of comprehensive
trauma systems.
http://www.amtrauma.org/
Cancer
American Cancer Society
(800) ACS-2345
Central to the cancer-fighting
mission of the American Cancer Society’s commitment to provide the public
with the most current information on: cancer, including risk factors, treatment
methods, prevention and detection guidelines; the latest cancer research
programs; ACS programs and services that help cancer patients and their
families; public health policies and ACS advocacy efforts; volunteer and
giving opportunities; races and programs.
The site also has a central
listing for finding the local American Cancer Society Chapter.
http://www.cancer.org
American Society of Clinical Oncology
Their website ASCO Online is
an interactive resource for oncology professionals and cancer patients.
ASCO Online provides a range of professionally edited information, as well
as interactive services for ASCO members. The site includes an extensive
section for People living with cancer.
http://www.asco.org/
The Association of Cancer Online
Resources
National Cancer Institute (800)
4- CANCER (800) 332-8615 (TTY)
The National Cancer Institute
(NCI) coordinates the government's cancer research program. NCI is the
largest of the 17 biomedical research institutes and centers at the National
Institutes of Health (NIH). NCI's Website is for cancer patients, the public,
and the mass media where you will find news and information on many of
its programs and resources.
http://www.nci.nih.gov/
Cancer Net
A wide range of accurate, credible
cancer information brought to you by the National Cancer Institute (NCI).
CancerNet™ information is reviewed regularly by oncology experts and is
based on the latest research. Searches available in English or Spanish
http://cancernet.nci.nih.gov/
OncoLink
OncoLink's mission is to disseminate
cancer information to health professional and lay persons.
It enables browsing by diseases
and medical or specialty-oriented menus.
http://www.oncolink.upenn.edu
Candlelighters Childhood Cancer
Foundation (800) 366-2223
The Candlelighters Childhood
Cancer Foundation® (CCCF) was founded in 1970 by concerned parents
of children with cancer, for parents of children and adolescents with cancer.
http://www.candlelighters.org/
Cancer Research Foundation of America
(800) 227-2732
The Cancer Research Foundation
of America's commitment to cancer prevention is fueled by the knowledge
that as much as 70 percent of all cancer is preventable, yet 550,000 Americans
die from this disease every year.
http://www.preventcancer.org/
General Information on dealing with
Cancer: 13 Steps to World Class Cancer Care
Cancer Support for the Heart and
Soul - Keeping the Faith
"Keepin' the Faith!" is a website
designed to help cancer patients, survitors, friends or loved ones to cope
with the emotional and spiritual changes that occur in the battle with
cancer. The site has over one hundred pages of cancer survivor's stories,
practical advice, cancer awareness and activism material, prayers for cancer
patients and more. A roster of over 40 cancer support volunteers who have
"been there" are ready to provide those new to cancer with one to one email
support. An online prayer list and crisis prayer team are available to
lend spiritual support.
http://www.ktf.org
Caregiver's
National Family Caregivers Association
(NFCA) 1 800 896 3650
10605 Concord St., Suite 501
Kensington, MD 20895-2504
NFCA is the a charitable organization
dedicated to making life better for America's family caregivers. There
are more than 25 million people who find themselves in a caregiving role.
And the numbers are growing daily. Family caregivers focus on their loved
one's needs. NFCA focuses on family caregivers.
http://www.nfcacares.org/
Chest Illnesses
(see also Lung Diseases)
American College of Chest Physicians
(ACCP) (800) 343-ACCP
A Listing of Links to a variety
of Chest Illnesses
The Philanthropic Arm of the American
College of Chest Physicians,
Child
Abuse
National Clearinghouse on Child
Abuse and Neglect Information (800) 394-3366 or (703) 385-7565
P.O. Box 1182 Washington, DC
20013-1182
The National Clearinghouse on
Child Abuse and Neglect Information, a national resource for professionals
seeking information on the prevention, identification, and treatment of
child abuse and neglect, and related child welfare issues. The Clearinghouse
is a service of the U.S. Department of Health and Human Services and the
Children's Bureau.
http://www.calib.com/nccanch/
Children's Bureau
Children's Bureau (CB) is located
within the United States Department of Health and Human Services' Administration
for Children and Families, Administration on Children, Youth and Families.
It is responsible for assisting States in the delivery of child welfare
services - services designed to protect children and strengthen families.
http://www.acf.dhhs.gov/programs/cb/
Child Abuse Prevention Network (607)
275-9360
Family Life Development Center,
Cornell University, Ithaca, NY, 14853-4401
Created by the Family Life Development
Center at Cornell University, this site offers links and information about
child abuse and prevention.
http://child.cornell.edu/
The International Society for the
Prevention of Child Abuse and Neglect (1) 312 644 6610 ext. 3273
401 N. Michigan Avenue, Suite
2200 Chicago IL 60611 USA
ISPCAN's mission is to prevent
cruelty to children in every nation, in every form. The International Society
for the Prevention of Child Abuse and Neglect, founded in 1977, is the
only multidisciplinary international organization that brings together
a worldwide cross-section of committed professionals to work towards the
prevention and treatment of child abuse, neglect, and exploitation globally.
http://child.cornell.edu/ispcan/ispcan.html
Children/Pediatrics
PediaNet - An Online resource
with information specific to that of children, including sections on nutrition,
growth information, prescriptions and product recall, as well as overall
information.
Resources for Pediatricians and
Parents
American Academy of Pediatric Dentistry
http://www.aapd.org
American Academy of Pediatric
Ophthalmology http://med-aapos.bu.edu
American Academy of Pediatrics
(AAP)
141 Northwest Point Boulevard
Elk Grove Village, IL 60007-1098 (847) 228-5005
http://www.aap.org
Candlelighters Childhood Cancer
Foundation (800) 366-2223
http://www.candlelighters.org/
The Candlelighters Childhood
Cancer Foundation® (CCCF) was founded in 1970 by concerned parents
of children with cancer, for parents of children and adolescents with cancer.
Allergy and Asthma Network/Mothers
of Asthmatics, Inc. AANMA (800) 878-4403
American Academy of Child and Adolescent
Psychiatry (202) 966-7300
Internet Resources for Special Children
(IRSC)
The IRSC web site is dedicated
to communicating information relating to the needs of children with disABILITIES
on a global basis in order to provide valuable information for parents,
family members, caregivers, friends, educators, and medical professionals
who interact with children who have disABILITIES, and act as a central
starting point for information and resources.
http://www.irsc.org/index.htm
Children and Adults with Attention
Deficit Disorders C.H.A.D.D. (800) 233-4050
499 Northwest 70th Avenue, Suite
101 Plantation, Florida 33317
Publishes brochures and a quarterly
newsletter on the topic. Also Maintains a support group network for adults
with ADD and parents of children with ADD.
http://www.chadd.org
Make a Wish (800) 722-WISH
(9474)
100 West Clarendon, Suite 2200
Phoenix, Arizona 85013
The Make-A-Wish Foundation is
the oldest, largest and most respected wish-granting organization
in the world. It exists for
one purpose: to fulfill the special wishes of children under the age of
18 who have life-threatening illnesses.
http://www.makeawish.org/
Compassionate
Touch
Compassionate Touch® (510)
935-3906
20 Swan Court Walnut Creek,
CA 94596
This touch therapy was created
by a massage therapist as a method for interacting with those in the later
stages of life. It is a modified massage technique, softer, since much
of the traditional therapies can harm elderly skin. It also is an excellent
therapy for those who are terminally-ill and has had success with reaching
Alzheimer's patients.
http://www.journeyofhearts.org/compassionatetouch
Continence
National Association For Continence
(NAFC) 1-800-BLADDER (800-252-3337)
Mailing Address: P.O. Box 8310,
Spartanburg, SC 29305-8310
Physical Address: 2650 East
Main Street, Spartanburg, SC 29307
National Association For Continence,
formerly Help for Incontinent People, is a
not-for-profit organization
dedicated to improving the quality of life of people with incontinence.
NAFC's purpose is to provide education, advocacy and support to the public
and to the health professional about the causes, prevention, diagnosis,
treatments, and management alternatives for incontinence.
http://www.nacf.org
Wound, Ostomy and Continence Nurse
Society (WOCN) 888 224-WOCN Toll-free
1550 South Coast Highway, Suite
#201 Laguna Beach, CA 92651
WOCN, an association of ET nurses,
is a professional nursing society which supports its members by promoting
educational, clinical, and research opportunities, to advance the practice
and guide the delivery of expert health care to individuals with wounds,
ostomies and incontinence.
http://www.wocn.org
Cystic
Fibrosis
Cystic Fibrosis Foundation
(800) FIGHT-CF
6931 Arlington Road Bethesda,
MD 20814
The mission of the Cystic Fibrosis
Foundation 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. A variety of information available about the disease and local
chapters.
http://www.cff.org/
Deaf-Blind,
Deafened - See also Hearing Impairment
American Foundation for the
Blind 1-800-AFB-LINE (232-5463)
11 Penn Plaza Suite 300 New
York, NY 10001
A non-profit organization founded
in 1921 and recognized as Helen Keller's cause in the United States, the
American Foundation for the Blind (AFB) is a leading national resource
for people who are blind or visually impaired, the organizations that serve
them, and the general public.
http://www.afb.org/index.html
Helen Keller National Center for
Deaf-Blind Youths and Adults (516)944-8900 (V)
Helen Keller International
(212) 943-0890
90 Washington Street New York,
NY 10006
Preventing blindness restoring
sight, and rehabilitating the blind, Helen Keller International works around
the world to benefit humankind.
http://www.intac.com/~kboccino/hki/index.html
The Deafened People Page (also known
as late-deafened or having acquired deafness)
Dentistry
American Dental Association
312/440-2500
211 E. Chicago Avenue Chicago,
Illinois 60611
The ADA is the professional
association of dentists dedicated to serving both the public and the profession
of dentistry. The ADA promotes the public's health through commitment of
member dentists to provide quality oral health care, accessible to everyone.
The ADA promotes the profession of dentistry by enhancing the integrity
and ethics of the profession, strengthening the patient/dentist relationship
and making membership the foundation of successful practice. The ADA fulfills
its public and professional mission by providing services and through its
initiatives in education, research, advocacy and the development of standards.
http://www.ada.org
American Academy of Pediatric Dentistry
312-337-2169
211 E. Chicago Ave., Suite 700
Chicago, IL 60611-2616
The American Academy of Pediatric
Dentistry is the national membership organization representing the primary
care specialty of pediatric dentistry. Its members are specifically trained
to prividebothe primary and comprehensive preventive and therapeutic oral
health care for infants, children, adolescents, and patients with special
health care needs.
http://www.aapd.org
Depression
- See also Mental Health
D/ART - Depression/Awareness,
Recognition and Treatment (D/ART) (800) 421-4211
Depression Awareness, Recognition,
and Treatment (D/ART) is a national public and professional education program
sponsored by the National Institute of Mental Health. D/ART's goal is the
alleviation of suffering for the 1 in 10 American adults with depressive
illness, and is based on more than 50 years of medical and scientific research
on depression.
http://www.nimh.nih.gov/dart/index.htm
National Institute of Mental Health
5600 Fishers Lane, Rockville
MD, 20857
General Index to Information:
http://www.nimh.nih.gov/
Public Information on Depression
(Including Information in Spanish)
Information on St John's Wort and
statement "NIMH cannot recommend the use of St. John’s wort at this
time."
National Depressive and Manic-Depressive
Association (NDMDA) (800) 82-NDMDA
730 North Franklin Street, Chicago,
IL. 60610
This site provides an overview
of depressive and bipolar disorders and their symptoms. Several
educational booklets are available on these subjects. A section titled
Ask the Doctor posts answers to questions posed by visitors. Special
areas are devoted to related issues including suicide and adolescents.
http://www.ndmda.org/
Walkers in Darkness
This site contains information
on mood disorders, treatment, medications and other resources.
Walkers in Darkness is a non-profit
education and support organization for mood disorders such as major depression
and bipolar disorder (manic depression). The members are, primarily, sufferers
of these mental illnesses and those who suspect that they may have a mood
disorder but are undiagnosed at this time. They range from those who are
just starting to come to terms with their illness to those who are long
term sufferers.
Family members and friends of
sufferers are welcome, as well as mental health professionals and those
who seek a better understanding of mood disorders.
http://www.walkers.org/
Depression.com
The mission of Depression.com
is to provide practical information to help the public be informed about
depression, its causes, and the treatments available.
Depression.com provides up-to-
date information about depression on the Internet.
The site is published by Matthew
Naythons, M.D., and the staff of NetHealth and funded by an unrestricted
educational grant from Bristol-Myers Squibb Company (one of the anti-depression
medication drug companies), and supported in part by Sun Microsystems.
http://www.depression.com/
DES
(Diethylstilbestrol) Exposure
DES Action USA (510)
465-4011
1615 Broadway, Suite 510, Oakland,
CA 94612
A national, non-profit consumer
organization dedicated to informing the public about DES (diethylstilbestrol)
and helping DES-exposed individuals. The organization, in it's 20th year,
publishes a quarterly newsletter, The DES Action Voice, and other publications
on various aspects of DES exposure. We also provide a link between DES-exposed
people and researchers and the medical community.
http://www.DESACTION.org
DES Cancer Network (800) DES-NET4
or (202) 628-6330
514 10th Street, NW, Suite 400
Washington, DC 20004-1403
The DES Cancer Network is an
organization that addresses the special needs of women who have had clear
cell adenocarcinoma of the vagina and/or cervix – a cancer linked to exposure
to DES before birth. The DES Cancer Network provides recovered patients
ways to contact one another and supports new patients who have been diagnosed
or are undergoing treatment. They also support the family and friends of
DES daughters who are clear cell cancer survivors, as well as those who
have lost loved ones to the disease, and they serve as a resource to health
care professionals and attorneys who have patients/clients with clear cell
cancer.
http://www.descancer.org/
Designated
Drivers
National GRADD (Group Rides
and Designated Drivers) (407) 671-2409
PO BOX 2116, Goldenrod, FL
32733-2116
The mission of National GRADD
is to prevent drunken driving tragedies and to save lives among college
communities by building and supporting a national network of collegiate
safe ride programs.
http://saferide.org
Diabetes
American Diabetes Association
(800) 232-3472
American Diabetes Association African
American Program
National Institute of Diabetes and
Digestive and Kidney Disease
http://www.niddk.nih.gov/
Available from the NIDDK: Fact
sheets, brochures, newsletters, easy-to-read publications, health education
campaign materials, and lists of resource organizations for the following
diseases: Diabetes, Digestive Diseases, Endocrine and Metabolic, Hematological
Diseases, Kidney Diseases, Nutrition and Obesity and Urologic Diseases.
http://www.niddk.nih.gov/health/health.htm
disAbilities
Disabled Peoples International
(204) 287-8010 Fax: (204) 453-1367 TTY: (204) 284-2598
101 - 7 Evergreen Place, Winnipeg,
Manitoba, Canada R3L 2T3
The purpose of DPI is to promote
the Human Rights of People with Disabilities through full participation,
equalization off opportunity and development. DPI is a grassroots, cross-disability
network with member organizations in over 110 countries, over half of which
are in the developing world. DPI is administrated through the headquarters
in Winnipeg, Canada and through eight Regional Development Offices.
http://www.escape.ca/~dpi
For a listing of International
Connections http://www.escape.ca/~dpi/links.html
Disability Resources
A website for linking people
with disabilities and chronic health conditions to resources, products
and services that promote active, healthy independent living.
http://disability.com
Internet Resources for Special Children
(IRSC)
The IRSC web site is dedicated
to communicating information relating to the needs of children with disABILITIES
on a global basis in order to provide valuable information for parents,
family members, caregivers, friends, educators, and medical professionals
who interact with children who have disABILITIES, and act as a central
starting point for information and resources.
http://www.irsc.org/index.htm
Our-Kids
This website is dedicated to
the kids and the families of parents, caregivers and others who are working
with children with physical and/or mental disabilities and delays.
The Our-Kids list consist of
over 800 people representing children of varying diagnosis; everything
from indefinite developmental delays and sensory integration problems,
to cerebral palsy, to rare genetic disorders. Over 35 countries
are represented on the list now.
Promoting the Silver Ribbon
Campaign to promote awareness and support for children with disabilities.
http://www.our-kids.org/
Accomplishments and Achievements
Archives
The AnA Archives hosts a collection
of Art, Literary and other works of those who have Handicaps, disAbilities,
Chronic illnesses and Pain.
The purpose of this site is
to present the variety and diverse creativity among those with disAbilities.
This is a collection of our art, skills, work and various activities and
abilities.
http://members.tripod.com/AnAHomepage/index.html
Domestic
Violence
National
Domestic Violence Hotline 1-800-799-SAFE (7233) or 1-800-787-3224
(TDD).
For emergencies Call your local
police at911.
The National Domestic Violence
Hotline answers about 10,000 calls each month from those experiencing domestic
violence, as well as their family and friends. They provide callers with
crisis intervention, information about domestic violence and referrals
to local programs 24 hours a day, 7 days a week in many languages.
http://www.usdoj.gov/vawo/newhotline.htm
Down
Syndrome
Association for Children with
Down Syndrome 516-221-4700
2616 Martin Avenue Bellemore,
NY 11710-3196
ACDS was formed in 1966 and
has a long history of providing unparalleled direct services and programs
to address the needs of children, young adults, and adults with Down syndrome.
Their goal is to be there for all families in their time of need. The ACDS
serves as a national resource center for information, referrals and education
about Down syndrome--with library, publications list, and web-site
information for families, agencies and professionals.
http://www.acds.org/
National Down Syndrome Society -
(212) 460-9330 or Toll free (800) 221-4602
666 Broadway, 8th Floor New
York, NY 10012-2317
Society was established in 1979
to increase public awareness about Down syndrome; to assist families in
addressing the needs of children born with this genetic condition;
and to sponsor and encourage scientific research. The NDSS provides information
and referral services through its
toll-free number; and develops
educational materials, many of which are distributed free of charge.
http://www.ndss.org/
National Association for Down Syndrome
(NADS)
P.O. Box 4542 - Oak Brook,
IL - 60522-4542
This not-for-profit organization,
was founded in Chicago in 1961 by parents of children with Down syndrome
who felt a need to create a better environment and bring about understanding
and acceptance of people with Down syndrome. Good local resource groups
for the Chicago area.
http://www.nads.org/
National Down Syndrome Congress
1-800-232-NDSC (6372)
The Down Syndrome WWW page - Understanding
the gift of life
A website that grew out of the
listserv mailing for Down Syndrome. Read by an international audience.
With articles and resources from families and people with Down Syndrome.
http://www.nas.com/downsyn/
Drug
and Pharmaceuticals
Food and Drug Administration
http://www.fda.gov
A variety of information available
on Prescription Drugs, Herbals, Botanicals, Cosmetics and more.
For an overall site index
Pharmaceutical Information Network
A resource base of information
on the many different pharmaceutical agents available.
http://pharminfo.com
Drug-Free,
Healthy Lifestyle
National Family Partnership
(888) 661-7426
Provides Parents with tools,
available on their website to help keep the children safe from drugs.
http://www.nfp.org
National Red Ribbon Week -
October
101 Things to Do Instead of
Drugs - used on this site was modified slightly to realize the full potential
of the "101 Things to Do" statement.
Drug Enforcement Agency
D.A.R.E Campaign
Drug Abuse Resistance Education
(D.A.R.E.), the largest substance abuse prevention and safety promotion
program in America. Information for Kids, Parents and Teachers.
http://www.dare-america.com/
Partnership for a Drug-Free America
Partnership's mission is to
reduce demand for illegal drugs by changing public attitudes about drugs
--to "denormalize" drug use, by making use less glamorous and less acceptable.
Offers the most complete and accurate compilation of information about
drugs on the Web including the slang names of drugs, information on different
drugs and tips on how to talk to your kids about drugs.
http://www.drugfreeamerica.org/
These resources are provided
for those visiting the site, looking for more information on a particular
disease or a loss. These sites are not meant to serve as substitutes for
medical information received from your physician.
We try to keep all information
within these resources current, but because of the nature of the Internet,
websites may change, without leaving updates, and information becomes outdated
rapidly.
Last updated March 17, 1999
All material, unless otherwise specified, is ©
1997-9 by Journey of Hearts A Healing Place in CyberSpace. We invite you
to share the information on this site with others who may benefit, but
ask that you share from the heart only and not for profit.
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