Resources

State Resources

Department of Elementary and Secondary Education
P.O. Box 480
Jefferson City, MO  65102

First Steps
First Steps offers coordinated services and assistance to young children with special needs and their families.  First Steps is designed for children, birth to age 3, who have delayed development or diagnosed conditions that are associated with development disabilities. Families can contact their county First Steps Office for more information by calling toll free:  1-866-583-2392.

Department of Health and Senior Services
http://www.health.mo.gov/AskUs.html
P.O. Box 570
Jefferson City, MO  65102
Phone:  573-751-6400

Alcohol, Tobacco, and Other Drug Prevention & Awareness
To reduce the risk of alcohol, tobacco, and other drug-exposed pregnancies, DHSS provides education for health care professionals to promote early identification, intervention, and referral of at-risk women and children.  Service coordination is also available to individuals up to age 20 who were prenatally exposed to alcohol and/or controlled substances and substantiated by the Department of Social Services to be at risk for child abuse/neglect.

Alternatives to Abortion
The Alternatives to Abortion program is for the purpose of funding alternatives to abortion services for women at or below 200% of the Federal Poverty Level.  It consists of services or counseling offered to a pregnant woman and continuing for one year thereafter, to assist her in carrying her unborn child to term instead of having an abortion and to assist her in caring for her dependent child or placing her child up for adoption.  Services include but are not limited to the following:  prenatal care; medical and mental health care; newborn or infant care; housing; utilities; educational services; food, clothing and supplies related to pregnancy, newborn care, and parenting; adoption assistance; job training and placement; establishing and promoting responsible paternity; ultrasound services; case management; domestic abuse protection; and transportation.

Children with Special Health Care Needs (CSHCN) Program
The CSHCN Program provides assistance to children birth to age 21 who meet financial and medical eligibility guidelines. This program focuses on early identification of children with special needs; funding for preventive, diagnostic, and treatment services; and provision of service coordination activities for families.  Service coordination is provided through 13 contracts and by Special Health Care Needs staff located in regional offices throughout the state.

Participants must meet both medical and financial eligibility guidelines and reside in Missouri.

Healthy Children and Youth (HCY)
The HCY Administrative Case Management Program assists families in meeting their child’s needs to function at an optimal level.  Assistance is provided for:  access to screening services; follow-up on referrals to additional medical providers; establishment of a medical home; service plan development; and follow-through on the treatment plan.

Treatment is determined by the primary care provider.  As a part of the Administrative Case Management role the Special Health Care Needs staff assists in securing the following services:  home health services, private duty nursing, personal care service, advanced personal care services, and HCY Case Management through Local Public Health Agencies.

This program is available to all MO HealthNet eligible children (birth to age 21) residing in Missouri who are in need of medically necessary services from MO HealthNet providers.

Family Partnership
The family Partnership was formed by Special Health care Needs (SHCN) to enhance the relationship between SHCN and the families they serve.  It provides support and information to these families and an opportunity for families of individuals with special health care needs to connect with each other.

The Family Partnership members include individuals with special health care needs, as well as, parents, family members or legal guardians.  The Partnership has three professional Family Partners who share responsibility for each of SHCN’s service areas.  The Family Partners are parents of special needs individuals served by SHCN.  In addition to providing information and resources to local members, they serve as the Partnership’s contact person for their designated areas.  They plan, schedule, and facilitate the Family Partnership meetings

TEL-LINK
Get Connected to Better Health
Phone:  800-TEL-LINK or 800-835-5465 

TEL-LINK is the Missouri Department of Health and Senior Services toll-free information and referral line for maternal and child health care.  The purpose of TEL-LINK is to confidentially provide information and referrals to Missouri residents concerning a wide range of health services offered by the state.  The operators can immediately connect you with community services that are available for you and your family.  TEL-LINK is answered weekdays from 8 a.m. to 5 p.m. Central Time.  Recorded messages are taken after 5 p.m. on weekdays and throughout the day and night on weekends and state holidays.  Your call will be returned during normal business hours. 

Department of Mental Health
Division of Developmental Disabilities
1706 East Elm St
Jefferson City, MO  65102
Phone:  800-364-9687

Network of Care
Network of Care for Mental Health/Behavioral and Developmental Disabilities

Network of Care is a highly interactive, single information place where consumers, community-based organizations and municipal government workers all can go to easily access a wide variety of important information.  The resources in this "virtual community" include a fast, comprehensive Service Directory; links to pertinent Web sites from across the nation; a comprehensive, easy-to-use Library; a political advocacy tool; community message boards; and many others.

Sarah Jian Lopez Medicaid Waiver
The Sarah Jian Lopez Medicaid Waiver allows access to funding for appropriate care and support for children with developmental disabilities so they may continue living at home with their families.

Medicaid guidelines require parental income and resources be considered for children who live at home, but allow such income and resources to be disregarded for children who live out of the home, in an institution, a group home, or in other residential settings.  The waiver allows parental income and resources to be disregarded for permanently and totally disabled children living at home who otherwise would require services at an institution.  Contact the Department of Mental Health about eligibility guidelines.

Department of Social Services
Broadway Office Building
P.O. Box 1427
Jefferson City, MO  65102
Phone:  800-735-2960

Adoption Home Page

Rehabilitation Services for the Blind
615 Howerton Court
P.O. Box 2320
Jefferson City, MO  65102
Phone:  800-592-6004

Rehabilitation Services for the Blind (RSB) is a state agency that has staff that specialize in providing free services to blind or visually impaired children ages 0-14 and their families.

MO HealthNet for Children
Phone:  888-275-5908 (Translation services available)

MO HealthNet for Kids, part of the federal Children's Health Insurance Program, is a health insurance program for uninsured children of low-income families who do not have access to affordable health insurance. 

Uninsured children, ages birth to 19, whose gross family income is up to 300% of the federal poverty level are eligible.  

 

General Genetics Clinics

University of Missouri
Columbia, MO
Phone:  816-882-6991
Provides comprehensive genetic services

Children’s Mercy Hospital  incorrect link correct link http://www.childrens-mercy.org/genetics
Kansas City, MO
Phone:  816-234-3771
Provides comprehensive genetic services

Saint Louis University School of Medicine
SLU Medical Genetics
SSM Cardinal Glennon Children’s Medical Center
St. Louis, MO
Phone: 3114-577-5639
Provides comprehensive genetic services

Washington University School of Medicine
St. Louis Children’s Hospital
St. Louis, MO
Phone:  314-454-6093
Provides comprehensive genetic services

Neurogenetics-Geneticists

Washington University School of Medicine
St. Louis Children’s Hospital
St. Louis, MO
Phone:  314-454-6093
Provides comprehensive genetic services with a neurologist

 

General Genetics Outreach Clinics

Springfield Outreach Genetics Clinic (University of Missouri) 
Springfield, MO
Phone:  573-882-6991
Provides comprehensive genetic services once a month

Versailles Metabolic Outreach Clinic (University of Missouri)
Versailles, MO
Phone:  573-884-5192
Provides comprehensive metabolic genetic services

Shriner’s Hospital (Washington University School of Medicine)
Shriner’s Hospital
St. Louis, MO
Provides comprehensive genetics services once or twice a month

 

Maternal Fetal Medicine/Prenatal Genetics

Center for Maternal Fetal Care, Women’s Health Associates
1601 East Broadway, Suite 330
Columbia, MO
Phone:  573-443-8796
Provides prenatal and preconception consultations, genetic counseling, ultrasound, first and second trimester screening, amniocentesis, and high-risk pregnancy care.

Center for Women’s Health and Fetal Health
Washington University School of Medicine
Missouri Baptist Hospital
St. Louis, MO
Phone:  314-996-6024
Provides diagnosis, treatment, management, and genetic counseling services for preconceptual and pregnant women. 

Children’s Mercy Prenatal Clinic
Kansas City, MO
Phone:  816-234-3771
Fetal Evaluation and Treatment Unit
Saint Louis University School of Medicine

SSM St. Mary’s Health Center
St. Louis, MO
Phone:  314-768-8730
Provides diagnosis, treatment, management, and genetic counseling services for 
preconceptual and pregnant women. 

Regional Perinatal Center
1000 E Primrose, #360
Turner Center
Springfield, MO  65807
Phone:  417-269-4037
Provides high-risk obstetrics including first trimester and sequential screening, and prenatal diagnosis

St. John’s Maternal Fetal Medicine
1900 S National Ave.
Suite 2900
Springfield, MO  65804
Phone:  417-820-3715
Provides high-risk obstetrics including first trimester and sequential screening, and prenatal diagnosis

University of Missouri Prenatal Diagnosis Program
Columbia, MO
Phone:  573-499-6041
Provides diagnosis, treatment, management, and genetic counseling services for pregnant women

Women’s Health Center
Washington University School of Medicine
Center for Advanced Medicine
St. Louis, MO
Phone:  314-454-7552
Provides diagnosis, treatment, management, and genetic counseling services for preconceptual and pregnant women

Multidisciplinary Genetic Clinics for Specific Disorders

Autism Clinic

The Thompson Center for Autism and Neurodevelopmental Disorders
University of Missouri
Columbia, MO
Phone:  573-882-6081
Provides comprehensive services for individuals with autism of all ages.  Specialist from genetics, developmental pediatrics, psychology, speech and neurology attend the clinic

Cleft Palate Clinic

Cleft Palate Clinic
Children’s Mercy Hospital
Kansas City, MO
Phone:  816-234-3771
Provides diagnostic and surgical management services provided by a team of experts in craniofacial disorders

Craniofacial Clinics

Craniofacial Clinic broken link correct link http://www.muhealth.org/body_child.cfm?id=2865
University of Missouri
Columbia, MO
Provides comprehensive services to children with craniofacial anomalies

Craniofacial Clinic
SSM Cardinal Glennon Children’s Medical Center
St. Louis, MO
Phone:  314-577-5639
Provides comprehensive services to children with craniofacial anomalies

Dermatology Clinic

Dermatology Clinic     
correct link is below http://www.childrensmercy.org/Clinics_and_Services/Clinics_and_Departments/Dermatology/Dermatology/
Children’s Mercy Hospital
Kansas City, MO
Phone:  816-234-3771
Provides diagnostic and management services from dermatologists, nurses, clinical genetics, and genetics counselors

Down Syndrome Clinics

Down Syndrome Clinic
Children’s Mercy Hospital
Kansas City, MO
Phone:  816-234-3771
A multidisciplinary approach with services provided by pediatric/genetics, social work, occupational, speech, and physical therapies, audiology, developmental/behavioral pediatrics, and nutrition

Down Syndrome Center
Washington University School of Medicine
St. Louis Children’s Hospital
St. Louis, MO
Phone:  314-454-6093

Huntington’s Disease Clinic

Mid Missouri Huntington’s Disease Program
University of Missouri
Columbia, MO
Provides comprehensive presymptomatic genetic testing protocol with evaluations by genetics, neurology, neuropsychological testing, and psychiatry.

Marfan Syndrome Clinic

Washington University School of Medicine
St. Louis Children’s Hospital
St. Louis, MO
Phone:  314-454-6095
A diagnostic and management clinic for children who have or are suspected to have Marfan syndrome or other related connective tissue disorder. 

Metabolic Clinics

University of Missouri
Columbia, MO
Phone:  573-884-5192
Provides metabolic diagnostic and management clinic for newborns, children, and adults.

Metabolic Genetics Clinic
Children’s Mercy Hospital
Kansas City, MO
Phone:  816-234-3771
Provides metabolic diagnostic and management clinic for children.  Includes patients identified by newborn screening.    

Saint Louis University School of Medicine
SSM Cardinal Glennon Children’s Medical Center
St. Louis, MO
Phone:  314-577-5639
Provides metabolic diagnostic and management clinic for adults and children.  

Washington University School of Medicine
St. Louis Children’s Hospital

St. Louis, MO
Phone:  314-454-6093
Provides metabolic diagnostic and management clinic for adults and children. 

PKU Telehealth Clinics
Cox South Medical Center Telehealth Clinic (University of Missouri)
Cox South Medical Center
Turner Center
Springfield, MO
Phone:  417-277-5619
Provides phenylketonuria (PKU) diagnostic and management clinic for children and adult patients with confirmed PKU.

Neurofibromatosis Clinics

Washington University School of Medicine
St. Louis Children’s Hospital
Phone:  314-454-6120

Neurofibromatosis Clinic
Saint Louis University School of Medicine
SSM Cardinal Glennon Children’s Medical Center
St. Louis, MO 
Phone:  314-454-6120

 

Local Resources

Down Syndrome Association of Greater St. Louis
8420 Delmar Blvd., Suite 506
St. Louis, MO  63124
Phone:  314-961-2504

The Down Syndrome Association of Greater St. Louis mission is to benefit the lives of people with Down syndrome and their families through individual and family supports, information, public awareness and advocacy.

Down Syndrome Guild of Greater Kansas City
10200 W. 75th Street, Suite 281
Shawnee Mission, KS  66204
Phone:  913-384-4848 or 913-384-9898 24-hour Information Line

The Down Syndrome Guild (DSG) of Greater Kansas City mission is to provide support and resources for individuals with Down syndrome and their families.  DSG seeks to provide the entire community with information and education to broaden awareness and foster positive attitudes regarding people with Down syndrome.

Easter Seals
Easter Seals provides services to children and adults with disabilities and other special needs, and support to their families. 

St. Louis City
www.easterseals.com
6918 Fyler 
St. Louis, MO  63139 
Phone:  314-644-6507 

Columbia
www.easterseals.com
3804 Santiago Drive 
Columbia, MO  65203 
Phone:  573-449-6783 

Kansas City
www.easterseals.com
908 Ne 116th Ter
Kansas City, Mo 64155
Phone:  816-734-2425

March of Dimes
Missouri March of Dimes Chapters

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, and low birthweight.

Pujols Family Foundation
111 Westport Plaza, Suite 255
St. Louis, MO  63146
Phone:  314-878-2105

The Pujols Family Foundation promotes awareness, provides hope and meets the tangible needs for families and children who live with Down syndrome; to provide extraordinary experiences for children with disabilities and/or life threatening illnesses; and to improve the standard of living and quality of life for impoverished children in the Dominican Republic through education, medical relief, and tangible goods.

St. Louis Arc
117 N Warson Road
St. Louis, MO  63132
Phone:  314 569-2211

The mission of St. Louis Arc is to provide the highest quality services to help people with developmental disabilities, and their families, achieve their goals.
Services provided are designed to maximize choice and to support people as they build quality lives within the St. Louis community. 

St. Louis Children’s Hospital
Search the online “Healthinfo” library, a St. Louis Children's Hospital's comprehensive resource on all things related to your child's health and safety.  Enter your topic of interest in the search box, or visit their individual sections listed below on their web page.


National Associations

National Down Syndrome Congress (NDSC)
Phone:  800-232-6372

The mission of the NDSC is to provide information, advocacy, and support concerning all aspects of life for individuals with Down syndrome.

This web site includes important information on Down syndrome €“ facts, concepts and philosophies that all who are concerned about people with Down syndrome need to know and use.  This includes a New Parent Package; a collection of materials refined over the years to provide new and expectant parents with an initial understanding of the challenges €“ and joys €“ of raising a child with Down syndrome.  There is also a wide array of current, expert articles, recommended reading and answers to the most frequently asked questions regarding Down syndrome. 

March of Dimes
1275 Mamaroneck Avenue
White Plains, NY  10605
Phone:  914-997-4488

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, and low birthweight. 

National Birth Defects Prevention Network
The mission of the National Birth Defects Prevention Network (NBDPN) is to establish and maintain a national network of state and population-based programs for birth defects surveillance and research to assess the impact of birth defects upon children, families, and health care; to identify factors that can be used to develop primary prevention strategies; and to assist families and their providers in secondary disabilities prevention.  For resources specific to NBDPN go to http://www.nbdpn.org/.

Spina Bifida Association  
4590 MacArthur Boulevard, NW Washington, DC  20007
Phone:  800-621-3141

The Spina Bifida Association of America (SBAA) addresses the specific needs of the spina bifida community and serves as the national representative of almost 60 chapters. SBAA's efforts benefit thousands of infants, children, adults, parents, and professionals each year. 

Easter Seals
233 Wacker Dr., Suite 2400
Chicago, IL  60606 
Phone:  800-221-6872
Easter Seals provides services to children and adults with disabilities and other special needs, and support to their families. 

Genetic Alliance
4301 Connecticut Ave. NW
Suite 404
Washington, DC  20008-2369
Phone:  202-966-8553

The Genetic Alliance is a coalition of more than 600 advocacy organizations serving 25 million people affected by 1000 conditions.

 

Federal Resources

MedLinePlus
MedLinePlus is a service of the U.S. National Library of Medicine and the National Institutes of Health.

MedLinePlus directs you to information to help answer health questions.  It brings together authoritative information from the National Library of Medicine, the National Institutes of Health (NIH), and other government agencies and health-related organizations.  Preformulated MEDLINE searches are included in MedLinePlus and give easy access to medical journal articles.  

National Center on Birth Defects and Developmental Disabilities
The mission of the National Center on Birth Defects and Developmental Disabilities (NCBDDD) promotes the health of babies, children, and adults, and enhances the potential for full, productive living.  This work includes identifying the causes of and preventing birth defects and developmental disabilities, helping children to develop and reach their full potential, and promoting health and well-being among people of all ages with disabilities. 

National Institutes of Health  
The National Institutes of Health (NIH), a part of the U.S. Department of Health and Human Services, is the primary federal agency for conducting and supporting medical research.  It helps lead the way toward important medical discoveries that improve people's health and save lives.  NIH scientists investigate ways to prevent disease as well as the causes, treatments, and even cures for common and rare diseases.  Composed of 27 Institutes and Centers, the NIH provides leadership and financial support to researchers in every state and throughout the world.

National Institute of Neurological Disorders and Stroke
The mission of the National Institute of Neurological Disorders and Stroke (NINDS) is to reduce the burden of neurological disease - a burden borne by every age group, by every segment of society, by people all over the world. 

National Library of Medicine
A part of the United States National Library of Medicine - is a good resource of additional information if there is a known syndrome diagnosed and more resources are needed.

General National Resources

Anencephaly Support Foundation
The purpose of the Anencephaly Support Foundation is to help parents who wish to continue these pregnancies, and help these parents examine the reasons why they believe carrying a child with anencephaly can be a fulfilling decision.

Living with Trisomy 13
The Living with Trisomy 13 site is for those families who have had a child diagnosed with Trisomy 13 €“ Patau Syndrome.  Whether they are:  on the prenatal journey, have a child living presently, or have a child who has died and are still grieving.

The Arc of the United States
The Arc of the United States advocates for the rights and full participation of all children and adults with intellectual and developmental disabilities.  Together with their network of members and affiliated chapters, they improve systems of supports and services; connect families; inspire communities, and influence public policy.

National Center for Hearing Assessment and Management
2615 Old Main Hill 
Logan, UT  84322
Phone:  435-797-3584

The National Center for Hearing Assessment and Management's mission is to have all infants and toddlers with hearing loss identified as early as possible and provided with timely and appropriate audiological, educational, and medical intervention.

National Organization for Rare Disorders (NORD)
55 Kenosia Avenue
P. O. Box 1968
Danbury, CT  06813-1968
Phone:  203-744-0100 or 800-999-6673 (voicemail only) TDD Number: 203-797-9590

The National Organization for Rare Disorders (NORD) is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them.  NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.

Stickler Involved People (SIP)
Stickler Involved People (SIP) is a not-for-profit organization whose mission is to educate and give support to all those affected by Stickler syndrome.  Stickler syndrome is a connective tissue disorder, a genetic malfunction in the tissue that connects bones, eyes, and ears.  This disorder is associated with problems of vision, hearing, bone and joint, facial and cleft palate.

Support Organization For Trisomy 18, 13 and Related disorders
The Support Organization for Trisomy (SOFT) is a network of families and professionals dedicated to providing support and understanding to families involved in the issues and decisions surrounding the diagnosis and care in Trisomy 18, 13 and related chromosomal disorders.  Support is provided during prenatal diagnosis, the child's life and after the child's passing.  SOFT is committed to respect a family's personal decision - in alliance with a parent / professional partnership.

 

Other Resources

Toll-Free Numbers for Health Information
These selected toll-free numbers for organizations provide health-related information, education, and support.  These organizations do NOT diagnose or recommend treatment for any disease. 

Case Management Resource Guide
The Case Management Resource Guide contains 1677 records with web links on almost every possible medical condition, including many toll free numbers to call for additional information.  This is part of the Dorland Health Care Information Site - and a good resource if a family is relocating to another state (in addition to contact information for the local agencies). 

eMedicine from Web MD
eMedicine comprises the largest and most current Clinical Knowledge Base available to physicians and other healthcare professionals.  Comprehensive medical textbook information is available for all clinical fields.

Healthfinder
Site includes medical information that is easy to understand and covers a wide variety of subjects.  It also includes a directory to find other agencies, clearinghouses, and resources for additional information. 

Med Help International
Search alpha list for additional information on health topics. 

Nemours
Nemours mission is to provide leadership, institutions, and services to restore and improve the health of children through care and programs not readily available, with one high standard of quality and distinction regardless of the recipient’s financial status.

V.I. Guide V.I. Guide contains specific information for assistive products for blind children and adults.

 

Precautions to Take While Pregnant

The information and resources listed here are intended for educational use only and are provided solely as a service. The information provided should not be used for diagnosing or treating a health problem or disease and is not a substitute for professional care. These links do not constitute an endorsement of these organizations or their programs by the National Birth Defects Prevention Network (NBDPN) and none should be inferred. The NBDPN is not responsible for the content of the individual organization web pages found at these links.

*The Internet resources specific to Infections in Pregnancy are shaded.

Birth Defects Research and Prevention Information

International Clearinghouse for Birth Defects Surveillance and Research
This site is dedicated to sharing data, news, and views on the research, monitoring, and prevention of congenital malformations. It provides information about the Clearinghouse, membership directory, publications/papers, and birth defects links for professionals and general audiences.

National Birth Defects Prevention Network (NBDPN)
NBDPN is a national organization of individuals at the local, state, and national level working in birth defects surveillance, research, and prevention. This site offers organizational information, newsletters, a list-serv, and related links to state birth defects monitoring programs and other national organizations.

Spina Bifida Association (SBA)
The mission of SBA is to promote the prevention of spina bifida and to enhance the lives of all affected. This site offers downloadable patient education materials and folic acid tutorials for professionals.

Birth Defects Databases

Skip navigation barGeneTests
GeneTests is a medical knowledge base that relates genetic testing to the diagnosis, management, and genetic counseling of individuals and families with specific inherited disorders. Its website contains a database of genetic diseases with summaries and diagnostic information, clinical descriptions, management details, resources, and references.

Medical Genetics, University of Kansas Medical Center
This website contains a wealth of information and hyperlinks for many national and international birth defects and genetics/birth defects organizations. Additionally, the site also contains referral information for those wishing to locate a health care professional with expertise in birth defects or genetic disorders.

Family Support Groups/Information for Families

The American College of Obstetricians and Gynecologists
You can search ACOG’s public website to find electronic educational pamphlets. Enter pregnancy infections in the Search box and you will find several titles including “Good Health Before Pregnancy: Preconceptional Health”; “Group B Streptococcus” and “Routine Tests in Pregnancy”.

About Pregnancy and Childbirth
This website features information on various subjects for pregnant women and moms-to-be including vaccinations, yeast infections, allergies, antidepressants, and alcohol.

About Pediatrics
This article provides a brief introduction for parents to the risk of disease and family history. The links included in the website provide visitors with additional information on topics such as creating a medical family tree to help determine genetic predisposition to certain diseases and genetic traits, prenatal and pediatric genetics screening questionnaires, My Family Health Portrait tool as developed by the U.S. Surgeon General's Family History Initiative, and information from the Mayo Clinic on family history and the role it plays in health and disease.

Genetic Alliance: Advocacy, Education & Empowerment
Genetic Alliance is a national coalition of consumers, professionals, and genetic support groups who voice the common concerns of children, adults, and families living with, and at risk for, genetic conditions. This site contains membership information, a searchable member directory, useful health resources, newsletters, and other publications.

March of Dimes (MOD)--Complications
This web page focuses on various complications of pregnancy and infections that could occur during pregnancy including chicken pox, cytomegalovirus, and rubella.

Keep Kids Healthy
This is a parent-focused site that contains a wealth of resources on family history in relation to diseases. It helps increase awareness of the role family history plays in both risk of disease and the promotion of health. The useful links included direct visitors to information on family history as presented by the Centers for Disease Control and Prevention (CDC), the National Society of Genetic Counselors, and the American Medical Association.

Medline Plus: Infections and Pregnancy
This helpful site provides information for women who are pregnant or who are planning to become pregnant on issues including chicken pox, listeria, herpes, cytomegalovirus, urinary tract, and yeast infections.

Our Kids
This website is designed to provide information and support for caregivers and family members with disabled children, as well as others who work with children with special needs. It includes sections on organizational information, support staff, and caregiver resources.

Special Child
This link is dedicated to providing support and information to parents and caregivers of children with special needs. This website includes family issues, success stories, and useful information for parents and caregivers, including a section on tips for caregivers.

The ARC of the United States
This organization works to promote services and supports for people with mental retardation and other developmental disabilities. Its website offers fact sheets and other resources pertaining to disabilities, including FAS and other alcohol-related conditions.

Government Agencies

CDC, National Center on Birth Defects and Developmental Disabilities
This website provides information regarding various divisions, branches, and offices in birth defects and developmental disabilities, as well as publications, health topics A-Z, employment opportunities, and links to the CDC home page.

CDC Pregnancy Information
This site provides information for before, during and after pregnancy. On the “Before Pregnancy” link, there is a Preventing Problems section that focuses on various topics including infections, vaccinations, smoking, alcohol, and diabetes.

CDC Pregnancy-planning Education Program
Learn what you need to know now to have a safe pregnancy and healthy baby with CDC’s online education program, available for women who are planning to become pregnant. By enrolling at www.ihealthrecord.org, an interactive health record, you can receive health information via email every other week for three months as you prepare for pregnancy. 

CDC Folic Acid Now
(Spanish)
This site provides information on the importance of folic acid in the prevention of birth defects. Also featured are an online CDC folic acid publication order form, an FAQ section, a folic acid fact sheet, and a quiz. The Spanish version features questions and a publications section for the Hispanic population.

CDC Science Ambassador Program
Follow the “Lesson Plans” link to “Standards Aligned Lesson Plans & Activities” to access a collection of health and science lesson plans. The lesson plans have been correlated to state and national standards and were developed to reach middle and high-school audiences. Topics include birth defects, neural tube defects, cystic fibrosis, alcohol and pregnancy, folic acid, cytogenetics, and epidemiology.

Education Resource Organization Directory
This site lists the State Directors of Children with Special Health Care Needs under “Organizations by Type.”

National Guideline Clearinghouse (NGC)
NGC is a public resource for evidence-based clinical practice guidelines and an initiative of the Agency for Healthcare Research and Quality, U.S. Department of Health and Human Services. NGC’s mission is to provide physicians, nurses, other health professionals, health care providers, health plans, integrated delivery systems, purchasers, and others with an accessible mechanism for obtaining objective, detailed information on clinical practice guidelines and to further their dissemination, implementation and use.

National Institutes of Health
This website provides updates on the latest health and scientific research conducted by NIH. The “Health Information Index” has a subject-word guide to diseases and conditions under investigation at NIH. This site also provides access to online catalogs, journals, and grant funding information.

New Jersey Department of Health and Senior Services
This web site provides information for women of childbearing age regarding preconceptional health and pre-pregnancy planning information.

Maryland Department of Health and Mental Hygiene
This web site features information that women of childbearing age should consider before having a baby including physical and emotional factors, work and home hazards, exercise and nutrition.

MMWR article, April 21, 2006-55(RR06) 1-23
This MMWR articles offers 10 recommendations made the CDC/ATSDR Preconception Care Group and Select Panel to improve preconceptional health and preconceptional health care in the United States. These recommendations include preconceptional doctor visits and providing additional care and interventions to those women who have been affected by adverse pregnancies and have identified health risks such as heart disease and diabetes.

 

Healthcare Professionals and Scientific Researchers

American Academy of Pediatrics (AAP)
This link provides online access to AAP’s recommendations, research findings, and policy statements, which convey helpful tips and health information for parents and providers on all child health topics.

American Family Physician
This website provides a comprehensive peer-reviewed cover article on preconceptional health care. It includes a patient handout on preconceptional health, a preconceptional health care checklist, and information on various elements of preconceptional health, including promotion of folic acid, assessment of genetic risks, carrier screening by ethnicity, congenital infections, environmental toxins, risk of prescription drug use during pregnancy, management of chronic maternal illnesses during pregnancy, exercise and nutrition, and psychosocial factors.

HuGE Net: The Human Genome Epidemiology Network
The HuGE Net represents a collaboration of individuals and organizations from diverse backgrounds that are committed to the development and dissemination of population-based human genome epidemiologic information. The website provides information about the HuGE Net and peer-reviewed synopses of epidemiologic aspects of human genes, prevalence of allelic variants in different populations, population-based disease risk information, gene-environment interaction, and quantitative data on genetic tests and services.

Institute for Child Health Policy
The Institute for Child Health Policy, a statewide Institution of Florida's State University System, was established in October 1986. Given the substantial changes in both the financing and organization attendant to the growth of managed health care, the Institute has focused its attention on children in managed care with special emphasis on children with special health care needs. Issues of access, utilization, cost, quality, and family involvement are principal areas of interest for the policy/program development, health services research, and evaluation programs.

Perinatology.com
This site provides information for women who are pregnant or are planning to become pregnant. Topics include infections, medications, and radiation and chemical exposure. The site also serves as a resource for healthcare professionals by providing abstracts from various peer-review journals that focus on perinatology.

National Council on Folic Acid (NCFA)
NCFA is a partnership of over 80 national organizations and associations, state folic acid councils, and government agencies whose mission is to improve health by promoting the benefits and consumption of folic acid. NCFA is managed by the National Healthy Mothers, Healthy Babies Coalition (www.hmhb.org) through a cooperative agreement with CDC. NCFA’s goals are to reduce folic-acid preventable birth defects by recommending that women of childbearing age take 400 micrograms of synthetic folic acid daily from fortified foods and/or supplements, in addition to consuming food folate from a varied diet, and to communicate and promote emerging and new science on folic acid, especially relating to maternal and child health.

National Society of Genetic Counselors (NSGC)
NSGC is the leading voice, authority and advocate for the genetic counseling profession. The “Consumer Information” section of their website explains the role of genetic counselors. The site also provides contact information for genetic counselors for those seeking a referral, both nationally and internationally.

Organization for Teratology Information Services (OTIS)
Site offers information about exposures to possible harmful substances during pregnancy. Contains a list of state contacts for teratology information, fact sheets, special projects, and links.

Surgeon General’s Family History Initiative
Offers an online family history tool that the user may complete and download.

Teratology Society
The Teratology Society web site provides information on teratology, the study of factors interfering with abnormal development and causing birth defects. It offers membership information and links to numerous birth defects sites. It also features a teratology discussion forum.