Newborn
Screening
Parent Resources `
All newborn babies are required by the State to get tested
for some rare disorders before they can leave the hospital.
Although, most babies appear healthy at birth, some may
have serious health problems. Newborn screening can detect
these disorders and treatments can begin sooner.
Below are listing of several helpful newborn screening
resources. If you have further questions or concerns you
can contact your baby’s health care professional
or State Health Department.
General Information
Baylor’s
Supplemental Newborn Screening http://www.baylorhealth.com/medicalspecialties/metabolic/newbornscreening.htm
Describes importance of newborn screening. Provides
FAQ, parent’s stories, and a list of conditions.
California Newborn Screening Program: Parent Resources http://www.dhs.ca.gov/gdb/html/NBS/ProgrOVforParents.htm
http://www.dhs.ca.gov/pcfh/gdb/html/NBS/EducationMaterial.htm
Expectational Parent Magazine
http://www.eparent.com/
EP’s on-line resource. Continuing 35 award-winning years of providing information,
support, ideas, encouragement & outreach for parents and families of children
with disabilities.
Family Voices
http://www.familyvoices.org/states.php
Family Voices, a national grassroots network of families
and friends, advocates for health care services that are
family-centered, community-based, comprehensive, coordinated
and culturally competent for all children and youth with
special health care needs; promotes the inclusion of all
families as decision makers at all levels of health care;
and supports essential partnerships between families and
professionals
Genetic Alliance
geneticalliance.org/
Genetic Alliance increases the capacity of genetic advocacy groups to achieve
their missions and leverages the voices of millions of individuals and families
living with genetic conditions.
March of Dimes
http://www.modimes.org/
The mission of the March of Dimes is to improve the health of babies by
preventing birth defects, premature birth, and infant mortality. We carry
out this mission through research, community services, education and advocacy
to save babies' lives. March of Dimes researchers, volunteers, educators, outreach
workers and advocates work together to give all babies a fighting chance against
the threats to their health: prematurity, birth defects, low birthweight.
The National Birth Defects Prevention Network
http://www.nbdpn.org/current/resources/bdpm2008.html.
The National Birth Defects Prevention Network's
Education and Outreach Committee is pleased to present the
2008 Birth Defects Prevention Month Packet, focusing on "Preventing
Infections during Pregnancy.
New England Newborn Screening Brochure
http://www.nergg.org/nbsbrochures.php
This brochure was developed by the New England Public Health Genetics Education
Collaborative, a NERGG subcommittee, to help overcome barriers to pertinent screening
information information, and to promote understanding and the importance of newborn
screening for all babies. The brochure was written by a certified genetic counselor,
with all documents having been professionally translated and reviewed by both
genetics professionals and laypeople fluent and literate in these languages.
Current available languages include English, Spanish, Portuguese, French, Chinese
(Traditional and Simplified), Vietnamese, and Arabic.
Newborn Screening Fact sheet for Providers
and Families
The federal Maternal Child Health Bureau, Health
Resources and Services Administration and health literacy
researchers at Louisiana State University developed the
following materials to help health care professionals
provide parents with easy to understand newborn screening
information.
A Parent’s Guide to Genetics
http://www.cdc.gov/ncbddd/ehdi/parentbook/default.htm
 A
Parents Guide to Newborn Screening DVD
The March of Dimes announces the release of their new DVD
on Newborn Screening, In a gentle, warm and supportive
context, this video explains what newborn screening is,
its purpose, the test procedure and what parents need to
do if retesting is necessary Each DVD has 2 segments -
one in English and one in Spanish. Runtime for each is
approximately 5 minutes. DVD item #09-2099-06 and price
= $20.00/DVD.
To order call: 1-800-367-6630. March of Dimes also offers
a Newborn Screening pamphlet in English (#09-1976-05) and
Spanish (#09-2042-06) that complements this DVD
STAR-G fact sheets for parents
http://www.newbornscreening.info/
Factsheets are written at the 6-7 grade level and are used by many NBS
programs and follow up providers.
Besides fact sheets for parents, there is general expanded
NBS info and
other NBS information. The project was initially funded
by the HRSA and
is now sustained by the Hawaii Department of Health Genetics
program.
Understanding Gene Testing
http://www.accessexcellence.org
Understanding Gene Testing represents
an effort by the National Cancer Institute and the
National Center for Human Genome Research to provide
basic information about gene testing and key genetic
concepts.
Parent Support
Madisons Foundation
madisonsfoundation.org
Madisons Foundation is dedicated to improving the quality and quantity of information
available to parents of children with rare, life-threatening diseases, and to
facilitating effective communication amongst parents, physicians and medical
experts.
The MAGIC Foundation
https://magicfoundation.org/www/docs/905.890/support-growth-children.html
The MAGIC Foundation is a national non-profit organization
created to provide support services for the families of
children afflicted with a wide variety of chronic and/or
critical disorders, syndromes and diseases that affect
a child’s growth.
MUMS
http://www.netnet.net/mums/
MUMS is a national Parent-to-Parent organization for parents or care providers
of a child with any disability, rare or not so rare disorder, chromosomal abnormality
or health condition. MUMS' main purpose is to provide support to parents in the
form of a networking system that matches them with other parents whose children
have the same or similar condition.
Parents Helping Parents
http://www.php.com/
PHP is a 27-year-old nonprofit, family resource center that benefits children
with special needs. PHP's mission is to help children with special needs receive
the resources, love, hope, respect, health care, education, and other services
they need to reach their full potential by providing them with strong families,
dedicated professionals, and responsive systems to serve them.
Unique
http://www.rarechromo.org/html/home.asp
Unique is a source of information, mutual support and self-help to families of
children with any rare chromosome disorders including deletions, trisomy, balanced
translocations, unbalanced translocations, rings, inversions, duplications, tetrasomy,
monosomy, triploidy, mosaic, etc.
Condition Specific
Information
The FOD Communication Network
http://www.fodsupport.org/
The FOD Communication Network is intended to be used as a resource for families,
friends, doctors, researchers and others who would like to support, educate and
provide a forum for the sharing of ideas and concerns for those whose lives have
been touched by a Fatty Oxidation Disorder.
Genetics Home
Reference
http://www.ghr.nlm.nih.gov/
Genetics Home Reference is the National Library of
Medicine's web site for consumer information about
genetic conditions and the genes or chromosomes responsible
for those conditions.
This website provides links to information for pediatricians
and families. The Genetics Home Reference also
features tools and resources for patients and families,
educators, other health professionals and more.
INFOGENETICS©
http://www.infogenetics.org/
This is a portal
to 12 of the
most used and
updated national
genetics databases.
INFOGENETICS© is
designed to
assist pediatricians
in the daily
care of their
patients and
determine how
to use the
constantly-changing
genetics information
and testing
in clinical
care. A project
developed through
funding from
the Department
of Health and
Human Services,
Maternal and
Child Health
Bureau.
IVA RESEARCH.ORG
http://www.ivasupport.org/
This
website provides
research and
information
for Isovaleric
Acidemia families.
MMA Research.com
http://www.mmaresearch.com/
This site was
created by the
families of children
with Methylmalonic
Acidemia. In
doing so, we
hope to help
others understand
how this disorder
affects our children
and what is being
done to find
better therapies
and ultimately
a cure.
Organic Acidemia Association
http://www.oaanews.org/
The Organic Acidemia
Association is
a volunteer non-profit organization
whose mission is to empower families and health care professionals
with knowledge in organic acidemia metabolic disorders. We
support early intervention through expanded newborn screening,
solicit contributions and distribute funding that supports
research toward improved treatment and eventual cures in
the areas of Organic Acid disorders.
Propionic Acidemia Research Network
(PARnet)
http://www.paresearch.org/
The mission of Propionic
Acidemia Research Network
(PARnet) is to facilitate communication
between the academic research community, physicians and
educators, and to monetarily assist researchers looking for
better treatments and a cure for PA. Propionic acidemia
affects patients and families in often devastating ways,
physically, financially and emotionally. The cost of
caring for a PA child increases each year and will continue
to burden national medical systems until we have a cure
for this disorder. PARnet is
focused on finding researchers who will pursue translational
research to move laboratory discoveries to clinical realities
for PA patients.
Save Babies Through Screening Foundation
http://www.savebabies.org/diseasedescriptions.php
Save Babies Through Screening Foundation supports,
assists and advocates screening for disorders that are
detectable through filter paper newborn screening; are
unlikely to be clinically diagnosed without screening;
and cause mental retardation, physical disability and/or
death in early childhood when left untreated
*This page includes resources that have compiled to
date. If you would like to suggest additional resources
to be added please sent them to screening@aap.org for
review.
*External Resources are not a part of the AAP.ORG
Web site. AAP is not responsible for the content of sites
that are external to the AAP. Linking to a Web site does
not constitute an endorsement by AAP of the sponsors
of the site or the information presented on the site.
Last Updated
February 21, 2008
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