& Other Resources
Alphabetically K -
Place in CyberSpaceTM
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
You may want to use the Search Engine
on the Medical Index Page for a specific request
National Kidney Foundation
of a Child to Stillbirth, Miscarriage, Death
30 East 33rd Street, New York,
American Association of Kidney Patients
The National Kidney Foundation's
mission is to prevent kidney and urinary tract diseases, improve the health
and well-being of individuals affected by these diseases, and increase
the availability of all organs for transplantation.
100 South Ashley Drive, Suite
280 Tampa, Florida 33602
National Institute of Diabetes and
Digestive and Kidney Disease
American Association of Kidney
Patients , a non-profit, membership-based, national voluntary health organization
providing education, support and advocacy services to kidney patients and
National Kidney Cancer Association
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.
1234 Sherman Ave, Site 203 Evanston,
The National Kidney Cancer Association
is a membership organization made up of patients, family members, physicians,
researchers, and other health professionals.
General Information on dealing
with Cancer: 13 Steps to World Class Cancer Care
The Compassionate Friends (630)
Disease - see also Chest Illness
The Compassionate Friends is
a national nonprofit, self-help support organization which offers friendship
and understanding to families who are grieving the death of a child of
any age, from
Centering Corporation, 1531 N. Saddle
Creek Rd., Omaha, NE 68104, Phone 402-553-1200
any cause. Recommended as an
excellent supportive organization, by someone who tragically lost a child
more than 10 years ago.
M.E.N.D. (Mommies Enduring Neonatal
Recommended as good resource
place for a variety of grief literature.
M.E.N.D. is a non-profit corporation
whose purpose is to reach out to those who have lost a child due to miscarriage,
stillbirth or early infant death and offer a way to share experiences and
information through meetings, the bi-monthly newsletter, and their Internet
S.A.N.D. (Stillbirth And Neonatal
Death Support, incl. miscarriage)
SANDS is a self-help support
group comprised of parents who have experienced the death of a baby through
miscarriage, stillbirth, or shortly after birth. SANDS provides immediate
and ongoing support to bereaved parents, families and friends. This site
works on the principle that sharing with others who have had similar experiences
can assist parents to work through the intense grief response which can
occur following the death of a baby.
SHARE Pregnancy & Infant Loss
Support, Inc. International Office 1-800-821-6819
H.A.N.D. (Houston's Aid In Neonatal
Death) (713) 529-4661
St. Joseph Health Center 300
First Capitol Drive St. Charles, MO 63301-2893
The mission of SHARE Pregnancy
and Infant Loss Support, Inc. is to serve those who are touched by the
tragic death of a baby through miscarriage, stillbirth or newborn death.
(This is an answering machine,
the call will be returned within 24 hours.)
Waiting with Love
P.O. Box 20348 Houston, Texas
H.A.N.D. is a support group
for parents whose babies have died any time from conception through late
infancy. Their mission is to help parents cope with feelings of grief and
isolation which accompany infant death. Although H.A.N.D. is primarily
set up to support the community of the greater Houston area, they will
attempt to aid anyone who contacts the organization to the fullest extent
possible within the resources available to them--Most this information
can be found on their web site.
A website for parents who choose
to continue a pregnancy knowing their unborn baby will die before or shortly
after birth, and for families who learn their newborn will die.
Join Together 617-437-1500
441 Stuart Street Boston, MA
Join Together is a national
resource center linking people through information and strategies to encourage
community action to prevent and reduce the use of illicit drugs, excessive
alcohol, tobacco and gun violence.
The National Organization of Parents
of Murdered Children, Inc. 1-888-818-POMC
Information on Gun Violence
100 East Eight St., B-41 Cincinnati,
The National Organization of
Parents of Murdered Children, Inc. (POMC) is the only national self-help
organization dedicated solely to the aftermath and prevention of murder.
Parents of Murdered Children, Inc. makes the difference through ongoing
emotional support, education, prevention, advocacy and awareness.
American Lung Association (ALA)
Tobacco A Burning Issue from the
American Cancer Society
Lupus Foundation of America,
Inc. support and patient information (800) 558-0121
Mother's Against Drunk Driving
1300 Piccard Drive, Suite 200
Rockville, MD 20850-4303 301-670-9292
The purpose of the Lupus Foundation
of America is to improve the quality of life of people with lupus, their
family and friends through detection of the disease alleviation of suffering
and eradication of lupus through research.
Mother's Against Drunk Driving
Information - General Sites for starting Medical Searches
Health - see also Depression
MEDLINE database may be accessed
free of charge on the World Wide Web. Two NLM Web-based products, PubMed
and Internet Grateful Med, provide this access.
PubMed Available from the National
Library of Medicine
Health consumers are encouraged
to discuss search results with their health care provider.
Large data base of information.
Emphasis of site is on resources that are relevant to the clinical practice
of medicine. Links selected for usefullness and quality.
Requires an initial registration,
no fees required.
A website for health care professionals
with links to publications, self-assessment features, medical news, Medline
reviews and other resources.
Requires an intial registration,
D/ART - Depression/Awareness,
Recognition and Treatment (D/ART) (800) 421-4211
- See Loss of a Child
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
National Institute of Mental Health
5600 Fishers Lane, Rockville
National Depressive and Manic-Depressive
Association (NDMDA) (800) 82-NDMDA
General Index to Information:
Public Information on Depression
(Including Information in Spanish)
Information on St John's Wort and
statement "NIMH cannot recommend the use of St. Johnís wort at this
730 North Franklin Street, Chicago,
National Alliance for the Mentally
Ill (800) 950-NAMI
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.
200 North Glebe Road, Suite
1015 Arlington, VA 22203
National Mental Health Association
(NMHA) (800) 969-NHMA
The members of these groups
are individuals and families coping with severe mental illnesses. They
offer emotional support and information about mental illness, coping strategies,
and local services that might be able to help you with a specific problem.
1021 Prince Street, Alexandria,
Internet Mental Health
The National Mental Health Association
is dedicated to improving the mental health of all individuals and achieving
victory over mental illnesses.
Founded in 1909 by Clifford
W. Beers, a former psychiatric patient, NMHA is the nation's only citizen
volunteer advocacy organization dedicated to addressing all aspects of
mental health and mental illnesses.
This site is designed for patients,
families and mental health professionals. The goal is to share information
on mental illness over the internet on the 50 most common psychiatric illnesses
using both the American and the European descriptions.
Internet Mental Health was created
for anyone who has an interest in mental health including: mental health
professionals, patients who want to learn more about their illness, friends
and families of patients, mental health support groups, students, members
of the general public who want to learn more about mental health
The mission of Depression.com
is to provide practical information to help the public be informed about
depression, its causes, and the treatments available.
Supportive Souls Mental Health Guide
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.
From someone who has been there.
An easy to navigate guide on several emotional and mental disorders. Included
within the site are a variety of links, a glossary of mental illness terms,
a phone list of Hot Lines and a Personal Bill of Rights. This site
provides a "Distraction Survey," self described as "pretty lengthy and
pretty frivolous" but no deep questions, for the times when "you feel like
you are drowning in whatever bad emotions you are going through," to sit
down and get distracted while trying to fill out the survey.
Prince Street Station P.O. Box
663 New York, NY 10012
Motherless Daughters is an organization
formed to provide support, community, and resources to women and girls
who have experienced early mother loss. Their mission is to bringing together
motherless daughters, otherwise isolated, to encourage healing and promote
awareness about the longlasting effects of such a loss.
National Multiple Sclerosis
Society 1-800-Fight-MS (1-800-344-4867)
733 Third Avenue, New York,
List of support groups and educational
Muscular Dystrophy Association,
USA (800) 572-1717
Muscular Dystrophy Association,
GPO Box 9932 Melbourne 3001
Links to world wide information
on Muscular Dystrophy Available in several different languages.
American Music Therapy Association,
Inc. Phone: (301) 589-3300
8455 Colesville Road, Suite
1000 Silver Spring, Maryland 20910, USA
AMTA was founded in 1998, its
purpose is the progressive development of the therapeutic use of music
in rehabilitation, special education, and community settings. AMTA is committed
to the advancement of education, training, professional standards, credentials,
and research in support of the music therapy profession.
The National Organization for
Losses - See Loss of a Child
The National Organization for
Victim Assistance (NOVA) is a private, non-profit, umbrella organization
working on behalf of victims of crime and disaster. NOVA is guided by four
purposes: to serve as the national advocate in support of victim rights
and services; to provide direct services to victims; to be an educational
resource and support to victim assistance professionals; and to be of service
to its members.
American Red Cross
Special Section on "The Crisis
Special Section on "Why Did
This Happen to Me?"
Resources available on Armed
Forces Emergency Services, Biomedical Services, Disaster Services, Health
and Safety Services, International Services, Youth Involvement
Good Grief! For Those Who Have Lost
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.
T.H.E. (The Healing Exchange)
BRAIN TRUST 617-623-0066
Kendall Square Box 425743 Cambridge,
This website was developed for
people to communicate about neurological disorders both on and off the
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.
California Nurses Association
1145 Market Street Suite 1100
San Francisco, CA 94103-1545
CNA offers a state-wide network
of Registered Nurses, working with community and consumer groups to continually
analyze and improve the ever-changing healthcare environment.
NursingNet's mission is to help
further the knowledge and understanding of Nursing for the public, and
to provide a forum for medical professionals and students to obtain and
disseminate information about Nursing and medically related subjects.
Information on the history of nursing from the National Library of Medicine
American Nurses Association home
page: Nursing World
Pam's Place on the Net
Nursing & Health Care Resources
on the Net
American Association of Critical-Care
Nurses (AACN) 949-362-2000
101 Columbia Aliso Viejo,
Wound, Ostomy and Continence Nurse
Society (WOCN) 888 224-WOCN Toll-free
The American Association of
Critical-Care Nurses (AACN) was established in 1969 as a not-for-profit
association designed to help educate nurses working in newly developed
intensive care units. Since that time, AACN has grown to become the world's
largest specialty nursing association.
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.
The American Dietetic Association
216 West Jackson Boulevard Chicago,
USDA (U.S. Department of Agriculture)
Center for Nutrition Policy and Promotion
Food and Nutrition Information Center
ADA website for promoting optimal
nutrition, health and well-being. For more specific information
regarding nutrition and diet, people are encouraged to contact a registered
Information on Nutrition Resources
FNIC is one of the information
centers at the National Agricultural Library (NAL) and part of the United
States Department of Agriculture's (USDA) Agricultural Research Service
The Food Resource
Information available includes
all of FNIC's resource lists, databases, as well as many other food and
nutrition related links.
This website is a project of
the Nutrition and Food Management Department, Oregon State University.
This FOOD RESOURCE is an attempt to link as much food-related information
as possible, to provide a large collection of jpeg images of foods, other
foods references, and links to related documents. A wide variety of information.
OC (Obsessive Compulsive) &
Spectrum Disorders Association (818) 990-4830
Donation - see also Transplantation
18653 Ventura Boulevard, Suite
414 Tarzana, California 91356
Obsessive Compulsive Foundation
The OC & Spectrum Disorders
Association operates as a non-profit organization which is committed to
the appropriate and accurate education, support, research and legislation
affecting children, adolescents and adults living with OCD and related
P.O. Box 70 Milford, CT
The Obsessive-Compulsive Foundation
is a community of those who have an interest in Obsessive-Compulsive Disorder
or related neurobiological disorders and whose goals are: 1) To educate
the public and professional communities about the disorders, 2) To support
individuals afflicted and their family members, and 3) To support research
into the causes and treatments of these disorders."
Coalition on Donation 1-800-355-SHARE
for free brochure
1100 Boulders Parkway, Suite
500 Richmond, Virginia 23225-8770
To locate the Organ Procurement
Organization in your area:
Advertising Council, the Coalition
on Donation launched the first multi-media national public
education campaign on organ
and tissue donation. As a national initiative, this project offers a professional,
coordinated, consistent visual image and message which summons the public
to action. At its core, the effort sets out to increase the overall number
of organ and tissue donors.
American Academy of Pain Management
13947 Mono Way #A Sonora CA
American Academy of Pain Medicine.
The American Academy of Pain
Management is the largest multidisciplinary pain society and largest physician
based pain society in the United States. The Academy is a nonprofit multidisciplinary
credentialing society providing Board Certification to practitioners in
the area of pain management. Resources available for Pain Patients.
4700 W. Lake Avenue Glenview,
American Pain Society
This site presents public information
published by the American Academy of Pain Medicine.
4700 W. Lake Avenue Glenview, IL 60025
The American Pain Society (APS)
is a multidisciplinary educational and scientific organization dedicated
to serving people in pain. The society was founded in 1978 as a national
chapter of the International Association for the Study of Pain (IASP),
and now includes more than 3,200 physicians, nurses, psychologists, dentists,
scientists, pharmacologists, therapists and social workers who research
and treat pain and advocate for patients with pain.
American College of Physicians Home
Care Guide for Advanced Cancer
Section on Managing Cancer Pain
National Chronic Pain Outreach Association,
301-652-4948, Fax 301-907-0745.
An excellent resource book from
the American College of Physicians, endorsed by the Canadian Society of
Palliative Care Physicians to help care for cancer patients in the home.
7979 Old Georgetown Road, Suite
100, Bethesda, MD 20814-2429,
NCPOA publishes the quarterly
(more or less) newsletter, Lifeline and serves as a clearinghouse of information
on any kind of chronic pain They also maintain a list of support groups
in many areas, have reprints of materials on all aspect of chronic pain,
and can help in setting up a local support group.
National Parkinson Foundation
and Pet Loss
Awakenings is an open forum,
designed and written specifically for all with an interest in Parkinson's
disease (PD), including patients, their caregivers, primary care physicians,
and specialists. It aims to improve understanding and management of the
American Veterinary Medical
The Pet Loss Support Hotline (916)
The Pet Loss Support Hotline
is a non-profit project of the Center for Animals in Society. The Center
is located in the School of Veterinary Medicine at the University of California,
Davis. The Hotline is supported solely by private donations.
"In Memory Of"...an Internet Pet
Callers place calls at their
Hours: 6:30 p.m - 9:30 p.m.
Monday through Friday, Pacific Time
(Check for availablity of summer
This site was created and dedicated
to a beloved pet. In Memory Of offers a place where you can pay tribute
to all animals " who, each in their own way, gave us love, happiness, and
joy...their gift of a better life here on Earth."
Pet Loss, good stories and poems,
candle-light service, some commercialization
A gentle and compassionate website
for pet lovers who are grieving over the death of a pet or an ill pet.
Here you will find personal support, thoughtful advice, The Pets Candle
Ceremony, Tribute Pages, healing poetry like Rainbow Bridge & much
Pet Loss Support Page
National Association of Poetry
Therapy (516) 944-9791
Stress Disorder (PTSD)
P.O. Box 551 Port Washington,
The National Association for
Poetry Therapy (NAPT) is a world-wide community of people who share a love
for the use of language arts in growth and healing. Members represent a
wide range of professional experience, schools of therapy, educational
affiliations, artistic disciplines, and other fields of training in both
mental and physical health. In addition to its professional membership,
NAPT welcomes all persons who are interested in the power of the healing
National Center for PTSD
The National Center for PTSD
has been one of the oldest and largest resources online for PTSD- and trauma
related resources. The Web site has gracefully grown into a valuable resource
not only for researchers, educators, and professionals, but offers a wide
range of information for people who suffer from PTSD and their families.
This is a program of the U.S. Department of Veterans Affairs and carries
out a broad range of activities in research, training, and public information
on Post-Traumatic Stress Disorder.
American Psychological Association
David Baldwin's Trauma Information
Information for Trauma Survivors
- a National Center Resources Listing of Resources
National Center Fact Sheets
This Trauma Website focuses
primarily on emotional trauma and traumatic stress, including PTSD (Post
traumatic Stress Disorder), whether following individual traumatic experience(s)
or a large-scale disaster. The purpose of this site is to provide
information for clinicians and researchers in the traumatic stress field.
Extensive listing of links and resources in the field.
University of Illinois Extension
Service Disaster Resources -
General Support & Information
- The general support and information links on this page are primarily
for those seeking information about trauma responses, ways of coping with
stress, and related mental health issues.
Disaster Handouts & Links
This section consolidates most all disaster-related links, including information
for dealing with international disasters, external links to disaster web
sites, mental health handouts and other materials that may be useful in
working with victims of a disaster.
The Disaster Resources website
provides access to information on disaster preparedness and recovery for
the State of Illinois and the Internet community. Information is available
from the University of Illinois Extension, along with links to disaster
agencies, organizations, and information networks.
Emotional Reactions to Disasters
This website is an information,
research and networking resource for victim assistance specialists, professionals
in related disciplines and all interested in the field of victimology.
V.A.O.R. is working towards the creation an virtual community of victim-assistance
service providers in cyberspace. Their mission is based on the belief that
open access to information and the sharing of new ideas and hard-learned
experiences from real life will aid victim-assistance providers of all
types in learning, growing and improving.
Psychological Trauma and PTSD
- Additional resources and links http://www.vaonline.org/trauma.html
Guide to Clinical Preventative
Agency for Health Care Policy and
A variety of information and
topic included on acute pain management, alzheimer's disease, benign prostate
hyperplasia, cancer pain, cardiac rehabilitation, cataract, depression,
heart failure, low back problems, mammography, otitis media, post-stroke
rehabilitation, pressure ulcers, sickle cell disease, smoking cessation,
unstable angina, and urinary incontinence
Center for Disease Control and Prevention,
Prevention Guidelines Database
is a comprehensive compendium of all of the official guidelines and recommendations
published by the US Centers for Disease Control and Prevention (CDC) for
the prevention of diseases, injuries, and disabilities.
Guidelines for Adolescent Preventative
Guidelines for Adolescent Preventive
Services (GAPS), a major AMA adolescent health initiative, is based on
a set of recommendations that describe the content and delivery of comprehensive
clinical preventive services for adolescents between 11-21 years of age.
The recommendations apply to all health care settings that provide services
Office of Disease Prevention and
National Coalition for Adult Immunization
The National Coalition for Adult
Immunization (NCAI) was formed in 1988 and is composed of more than 95
professional medical and health care associations, advocacy groups, voluntary
organizations, vaccine manufacturers, and government health agencies. The
common goal of improving the immunization status of adults to levels specified
by the US Public Health Service in Healthy People 2000.
Society for Progressive Supranuclear
Palsy, Inc. 1-800-457-4777
Suite #5065 Johns Hopkins Outpatient
Center 601 N. Caroline St. Baltimore, MD 21287
US TOO International, Inc. Prostate
Cancer Support Groups Toll-Free (800) 80-US TOO
930 N. York Road Suite
50 Hinsdale, Illinois 60521
Prostate Health - A website sponsored
by the American Urological Association
US TOO is an independent network
of support group chapters for men with prostate cancer and their families.
US TOO groups offer fellowship, peer counseling, education about treatment
options, and discussion of medical alternatives without bias. One of our
goals is to foster public awareness of prostate disease.
The Prostate Health Web site
editorial board is composed of Academic Urologists, Private Practice Urologists,
Prominent Primary Care Physicians, as well as Radiologists. It is our hope
Man to Man (American Cancer Society)
that this site will inform,
educate and stimulate discussions.
American Urologic Association
Symptom Index - A Quiz to determine the severity of urinating problems.
National Psoriasis Foundation/USA
American Psychiatric Association
American Academy of Child and Adolescent
Psychiatry (202) 966-7300
American Psychological Association
Planned Parenthood health centers
nationwide provide high quality, affordable reproductive health care and
sexual health information to more than five million women, men and teens.
Planned Parenthood welcomes everyone --regardless of race, age, sexuality,
disability, or income.
Their main page provides a search
engine by zip code to help you locate local resources.
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
Last updated October 5, 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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