 
         
General
Kaiser Internet Sites
Kaiser Permanente Main Web Site
http://www.kp.org
The Kaiser
Permanente web portal to information for
members, prospective members, employers,
brokers, media representatives, job seekers
and the general public.
general genetics
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Programs
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Genetic
Counseling - General Information
The
Alliance of Genetic Support Groups
http://www.geneticalliance.org/
The
Genetic Alliance (formerly the Alliance
of Genetic Support Groups) is an international
coalition of individuals, professionals,
and genetic support organizations that is
working together to enhance the lives of
everyone impacted by genetic conditions.
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Description of Common Genetic Disorders
http://www.geneclinics.org
Welcome
to the GeneTests·GeneClinics Web
site, a publicly funded medical genetics
information resource developed for physicians,
other healthcare providers, and researchers,
available at no cost to all interested persons.
A one-time registration process is required.
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March
of Dimes
http://www.modimes.org
The
mission of the march of dimes to improve
the health of babies by preventing birth
defects and infant mortality.
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Mountain States Regional Genetics Services
Network
http://www.ahsc.arizona.edu/msrgsn
The MoSt GeNe website is for sharing medical
genetics knowledge and resources with other
health care practitioners, patients, and
caregivers.
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National
Organization of Rare Diseases (NORD)
http://www.rarediseases.org
NORD
has information on research, news and legislation
as well as offers products and services
on rare diseases.
100
Rt 37 PO Box 8923
New Fairfield
CT 06812-8923
(800) 999-6673
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National
Society of Genetic Counselors
http://www.nsgc.org
The
NSGC will promote the genetic counseling
profession as a recognized and integral
part of health care delivery, education,
research and public policy.
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Northwest
Regional Genetics Services Network
http://mchneighborhood.ichp.edu/pacnorgg
PacNoRGG
is a federally-funded group of genetic services
providers, consumers, public health professionals,
and educators working together to improve
genetic services for families in our region
-- Alaska, Idaho, Oregon, and Washington.
Our web site philosophy is to provide genetics
information specific to our region, and
links to a few other national, comprehensive
sites. We hope to connect genetic service
providers, public health professionals,
consumers of genetic services and the public
with local, regional and national genetic
resources and information.
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PBS
television special on genetic testing
http://www.pbs.org/gene/
An
intimate look at the social, ethical and
emotional consequences of genetic testing
for individuals and families.
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Genetic
Counseling - Common Chromosome Abnormalities
Alphafeto Protein
Please see the
XAFP Program links section.
Down Syndrome
Please
see the XAFP Program Down Syndrome links section.
Trisomy 13/Trisomy 18
Support
Organization for Trisomy 18, Trisomy 13
and Related Disorders
http://www.trisomy.org
S.O.F.T.
is a nonprofit volunteer organization offering
support for parents who have had a child
with a chromesome disorder, and education
to familes and professionals interested
in the care of these children.
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Genetic
Counseling - Common Sex Chromosome Abnormalities
Fragile X syndrome
FRAXA
Research Foundation
http://www.fraxa.org
The
FRAXA information website has the mission
to support research aimed at the treatment
for Fragile X Syndrome.
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Fragile X Association of Southern California
http://www.fraxsocal.org/
The
Fragile X Association of Southern California
was formed to promote public awareness of
Fragile X syndrome with special emphasis
on educators and health professionals; provide
a forum for families of children with Fragile
X to meet and share their ideas, concerns
and problems; and support scientific research
on Fragile X syndrome.
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National Fragile X Foundation
http://www.nfxf.org
The NFXF contains vast information on Fragile
X, the research, and services that it offers.
Furthermore, there are links and contact
information directly available through this
link.
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The
Northern California Fragile X Web Site
http://members.aol.com/ncfxa/northern.htm
The
NCFX organization was formed to promote
public awareness of Fragile X Syndrome with
special emphasis on educators and health
professionals. Also, to provide a forum
for families of children with Fragile X
to meet and share their ideas, concerns,
and problems; and to support scientific
research on Fragile X Syndrome.
Contact Information
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Genetic
Counseling - Common Sex Chromosome Abnormalities
Turner syndrome
Health
Supervision for Children with Turner Syndrome
http://www.aap.org/policy/01149.html
The
American Academy of Pediatrics has set up
this set of guidelines to assist the pediatrician
in caring for the child in whom the diagnosis
of Turner syndrome has been confirmed by
karyotype.
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The
Turner’s Syndrome Society of the United
States
http://www.turner-syndrome-us.org
Enabling
innovations in health & learning for
Turner syndrome women worldwide! The Society
is a non-profit public service organization
with a two-fold mission: ° To enable
innovations in health for Turner syndrome
women by: Working with health-care professionals
to expand knowledge about the condition,
its diagnosis, treatment, & prevention
through research Promoting the successful
rearing, affirmation, and support of individuals
affected by the condition ° To enable
innovations in learning for Turner syndrome
women by: Providing a public forum for communication
of state-of-the-art information, exchange
of ideas, and social support Increasing
public awareness of Turner syndrome, its
effects, & its possibilities
1313
Southeast 5th Street, Suite 327
Minneapolis, Minnesota 55414
1-800-365-9944
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Genetic
Counseling - Common Sex Chromosome Abnormalities
XXY, XYY & XXX
Klinefelter
Syndrome and Associates
http://www.genetic.org/ks/
A non-profit education and support organization
for individuals with Klinefelter Syndrome,
XXX, XYY, and other variants.
National
Organization
Northern California Chapter
Point of Contact:
Melissa Aylstock (same point of contact
and address as national organization)
ks47xxy@ix.netcom.com
PO Box 119
Roseville, CA 95678-0119
1-916-773-1449
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Klinefelter
Syndrome Support Group Homepage
http://klinefeltersyndrome.org/index.html
This
site contians links to support group information,
conferences, reserach, resources, peoples
emails, associations and organizations,
variant information, pharmacies and more.
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Prenatal
Diagnosis
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Pediatric
Genetics
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Adult
Genetics
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Cancer
Genetics - General Information
American Cancer Society
http://www.cancer.org/
The ACS homepage provides information in
both English and Spanish. It is a nonprofit
organization which supports research, conducts
educational programs and offers many services
to patients and their families. The ACS
provides free booklets on breast self-examination,
breast cancer and sexuality. (English/Spanish)
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Association
of Cancer Online Resources
http://www.acor.org/
ACOR offers access to multiple e-mail lists
and a variety of unique websites. The mailing
lists are designed to be online support
groups providing information, community
and support to patients, caregivers or anyone
looking for answers about cancer.
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Cancer
Care
http://www.cancercare.org/
Cancer
Car pro vides information in English and
Spanish and is a national, nonprofit organization
that helps patients, their families and
professional caregivers. Through one-to-one
counseling, specialized support groups,
educational programs, telephone contact
and on-line services, Cancer Care provides
support, guidance, information and referral
free of charge. This website categorizes
content into diagnosis cancer types. Other
featured topics include: Legislative Alert,
Cancer Care Bookstore and Teleconferences.
1-800-813-HOPE
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Cancer
Information Service
http://www.nci.nih.gov/
CIS
is a program of the National Cancer Institute,
is a website and nationwide phone service
for cancer patients, their families and
friends, the public and health care professionals.
For free booklets, information on Reach
to Recovery or other services in local areas,
Call 1-800-4-CANCER. This number connects
callers all over the country to the office
that serves their area. (English/Spanish).
1-800-4-CANCER
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ClinicalTrials.gov
http://www.ClinicalTrials.gov
The National Institutes of Health has started
a new online service connecting people with
information about clinical research. The
site tells people how to participate in
clinical trials, which evaluate the safety
and effectiveness of new treatments. Through
this new database, NIH offers up-to-date
information on promising patient-oriented
research on hundreds of diseases and conditions,
said Dr. Ruth L. Of 4,000 trials described
in the database, more than 2,800 are still
recruiting participants.
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FORCE:
Facing Our Risk of Cancer Empowered
http://www.facingourrisk.org/
FORCE: Facing Our Risk of Cancer Empowered
provides support for women at high risk
for breast and ovarian cancer. It also provides
support for those families with increased
risk of developing these cancers and helps
women find resources to determine their
level of risk. Chat room available.
1-954-255-8732
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Kids Konnected
http://www.kidskonnected.org/
Kids Connected is a website designed especially
for children who have a parent with cancer.
This non-profit corporation was founded
under the premise that when a parent gets
cancer, the entire family is affected and
the needs of the children must be addressed.
Kids helping kids is the core of Kids Konnected.
The program offers children: a 24 hour call-line;
support groups for various ages (3-7 years
old, 7-12 years olds and teens); camping
and other recreational events; newletters;
online support/e-mail.
1-714-380-4334
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Look Good...Feel Better
http://www.lookgoodfeelbetter.org/
Look
Good...Feel Better is a free, national public
service program. It is sponsored by The
Cosmetic, Toiletry and Fragrance Association
Foundation, the American Cancer Society
and the National Cosmetology Association.
This program is dedicated to teaching beauty
techniques to female patients to help restore
their appearance and self-image during cancer
treatments. Also, this website offers information
in Spanish.
1-800-395-LOOK
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National
Cancer Institute
http://cancer.gov
National Cancer Institute is a website that
provides for cancer patients, their families
and friends, the public and health care
professionals. This website provides information
on research programs and funding, cancer
information, clinical trials and statistics.
1-800-4-CANCER
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National Coalition for Cancer Survivorship
http://www.canceradvocacy.org
The
NCCS is a supportive organization for men
and women cancer survivors. It offers information
on survivorship programs, public health
policy alerts, conferences and events. This
website offers a Hope Photo Album and a
Survival Toolbox Kit in English and Spanish.
1-877-622-7937
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National Women's Health Information Center
http://www.4woman.gov/
The
National Women's Health Information Center
is sponsored by the U.S. Public Health Services's
Office on Women's Health and the Department
of Defense, provides a centralized point
of access to women's health information
from the federal government and the private
sector. This site also offers information
in Spanish.
1-800-994-WOMAN
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NOAH:
Preguntales a NOAH Sobre la Salud
http://www.noah-health.org
NOAH's
stated mission is to "seek to provide
high quality full-text health information
for consumers that is accurate, timely,
relevant and unbiased". "Since
its launch in June of 1995, NOAH has established
its presence on the web as an outstanding
bilingual consumer health information source.
Its dedication and efforts have not gone
unnoticed. With well over 350,000 page views
each month, NOAH has also received attention
from various web critics and been awarded
for its originality, content and design.
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Northern California Cancer Center
http://www.nccc.org/
The
NCCC provides information on the following:
research, clinical trials, cancer registries,
education/information and publications.
The NCCC "seeks to reduce the burden
of cancer in Northern California through
surveillance, epidemiology, prevention research,
and education."
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Oncology Nursing Society: Online
http://www.ons.org/
ONS
Online provides education, support and resources
for oncology nurses. To use this website
one must be a member of the Oncology Nurse's
Society. Member registration is available
online.
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The University of Pennsylvania Cancer Center:
OncoLink
http://www.oncolink.upenn.edu/
OncoLink is a cancer information site at
the University of Pennsylvania. It is one
of the most comprehensive cancer sites on
the web. Through OncoLink you can get comprehensive
information about specific types of cancer,
updates on cancer treatments and news about
research advances. This site addresses symptom
management, clinical trials, financial issues,
psychological issues, conferences and book
reviews. Information is updated daily and
is provided at various levels, from introductory
to in-depth.
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Cancer
Genetics - Breast Cancer
Avon's Breast Cancer Awareness Crusade
http://www.avoncrusade.com
The Avon Breast Cancer Awareness Crusade
is one of 30 Avon - sponsored programs in
countries around the world that support
women's health. Together, these programs
form the Avon Worldwide Fund for Women's
Health, which has distributed over $65 million
since 1992. By the start of the next millennium,
this fund expects to distribute another
$35 million, bringing Avon's total support
for women's health to $100 million, more
than any other company has committed...
read the transcripts from conferences about
breast cancer from America Online.
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Breast Cancer Net
http://www.breastcancer.net/
Breast Cancer Net, since 1996 has offered
the latest news on breast cancer detection
and treatment. This website provides: articles,
news, support and resources.
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Community
Breast Health Project at Stanford
http://www-med.Stanford.EDU:80/CBHP/
Stanford's Community Breast Health Project
has the mission is to improve the lives
of people touched by breast cancer by acting
as source of information and support, providing
volunteer opportunites and serving as an
educational resource.
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The
Internet Breast Cancer Men Group
http://listserv.acor.org/archives/malebc.html
This
site is for anyone dealing with male breast
cancer whether they be a man suffering from
this disease, his doctor, other doctors
interested in the disease, and researchers
studying MBC.
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Living Beyond Breast Cancer
http://www.lbbc.org
Living
Beyond Breast Cancer is a non-profit organization
that strives to empower women with breast
cancer and to give them tools to achieve
the best quality of life. They offer semi-annual
educational conferences, newsletters and
a survivors helpline.
(610)
645-4567
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National Alliance of Breast Cancer Organizations
http://www.nabco.org/
The
National alliance of Breast Cancer organizations
is a network that offers detection, treatment
and support to breast cancer patients. NABCO
works for legislation that benefits women
treated for this disease.
1-888-80-NABCO
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The
National Breast Cancer Coalition
http://www.natlbcc.org/
The NBCC is a grassroots effort in the fight
against breast cancer. In 1991, the Coalition
was formed with one mission, "to eradicate
breast cancer through action and advocacy."
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The Susan B. Komen Breast Cancer Foundation
http://www.breastcancerinfo.com/
The
S.B.K. Breast Cancer Foundation offers information
on breast health, news updates, comments
from survivors and a calendar of events.
For more information about breast health
or breast cancer or information on The Race
for the Cure, call the foundation's national
toll-free Breast Care Helpline or visit
the foundation's award-winning website.
1-800-462-9273
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SusanLoveMD.com
http://www.susanlove.com
For women concerned about breast cancer
and midlife issues. Includes bulletin boards,
decision making, living with breast cancer,
and personal guidance.
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Y-ME National Breast Cancer Organization
http://www.Y-ME.org/
Y-ME's
home page includes breast health information,
breast self-examination guidelines, a Kid’s
Corner, a Teen Program, support groups,
newsletters, publication ordering information,
information on wigs/prothesis and links
to many other resources. Most information
also available in Spanish. Y-ME has a 24
hour hotline staffed by survivors. Trained
male counselors are also available to talk
to male partners of breast cancer patients.
ENGLISH
- 1-800-221-2141
SPANISH - 1-800-986-9505
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Breast
Cancer Tracking System (BCTS)
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Expanded
Alpha-Fetoprotein Program (XAFP) - General Information
The
Alliance of Genetic Support Groups
http://www.geneticalliance.org/
The
Genetic Alliance (formerly the Alliance
of Genetic Support Groups) is an international
coalition of individuals, professionals,
and genetic support organizations that is
working together to enhance the lives of
everyone impacted by genetic conditions.
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