Family Resources - Genetic Conditions

Early Hearing Detection and Intervention (EHDI) Program
The EHDI program is a process of identification and intervention for newborns with congenital hearing loss.
http://www.michigan.gov/mdch/0,1607,7-132-2942_4911_21429---,00.html

Michigan Department of Public Health - Family Resources
http://www.michigan.gov/mdch/0,1607,7-132-2942_4911_4916-64851--,00.html

Michigan Newborn Hearing Screening
Goal: All newborns will be screened for hearing loss before 1 month of age
http://www.michigan.gov/mdch/0,1607,7-132-2942_4911_21429-57986--,00.html

Michigan's Genetics Resource Center
http://migeneticsconnection.org

Michigan Newborn Screening
http://migeneticsconnection.org/newborn.shtml

A First Step to Your Baby's Health
click here to download PDF

Michigan's Community Hearing Screening Program
click here to download PDF

Services for Children who are Deaf or Hard of Hearing: A Guide to Resources for Parents and Providers
click here to download PDF

MINNESOTA

Minnesota Children with Special Health Needs

The Minnesota Children with Special Health Needs website is for families and serves a broad range of disabilities. It includes family materials, and instructions for calling the information and assistance line.
http://www.health.state.mn.us/divs/fh/mcshn/index.htm

PACER

Through its ALLIANCE and other national projects, PACER, a national center, responds to thousands of parents and professionals each year. PACER resources make a difference in the lives of 6.5 million children with disabilities nationwide. With assistance to individual families, workshops, materials for parents and professionals, and leadership in securing a free and appropriate public education for all children, PACER's work affects and encourages families in Minnesota and across the nation.
http://www.pacer.org/

OHIO

Ohio's Newborn Screening Program Parent Brochure

click here to download PDF

WISCONSIN

Wisconsin Newborn Screening
http://www.slh.wisc.edu/newborn

Wisconsin Early Hearing Detection and Intervention
http://dhfs.wisconsin.gov/DPH_BFCH/cshcn/sndBegning.htm

Wisconsin Children and Youth with Special Health Care Needs
http://dhfs.wisconsin.gov/DPH_BFCH/cshcn

Parent to Parent of Wisconsin
http://www.familyresourceconnection.org/ptpow.htm

More Family Support Resources

March of Dimes

The March of Dimes 5-minute video, A Parent's Guide to Newborn Screening, explains what newborn screening is, its purpose, the test procedure, and what parents need to do if retesting is necessary. This video is available in both English and Spanish.
http://www.marchofdimes.com

Information and Resources for Families and Providers

http://medhomes.region4genetics.org

Genetics Home Reference

The Genetics Home Reference is an online guide to understanding genetic conditions and provides free, up-to-date health information.

http://ghr.nlm.nih.gov

NORD (National Organization for Rare Disorders)

Disorder reports are written in understandable language and include synonyms, a general description of the disorder, symptoms, causes, affected population, standard and investigational therapies, resources for additional information, and references.

55 Kenosia Avenue
P.O. Box 1968
Danbury, CT 06813-1968
203-744-0100 or 1-800-999-6673 (voice mail) or TDD 203-797-9590
fax: 203-798-2291
email: orphan@rarediseases.org
web site: http://www.rarediseases.org

Parent Organization Contacts
click to download Word document

National Newborn Screening and Genetics Resource Center

Lists different conditions each state screens for and has abbreviations by category
http://genes-r-us.uthscsa.edu

STAR-G (Screening, Technology and Research in Genetics)
Fact sheets for parents on metabolic disorders

http://www.newbornscreening.info/Parents/facts.html

Genetic Alliance

http://www.geneticalliance.org/

MUMS (Mothers United for Moral Support)
http://www.netnet.net/mums/

National Institutes of Health News

Up-to-date, reliable, consumer-friendly information about a genetic condition, or an explanation of the basics of genetic science
http://www.nih.gov/news/pr/nov2006/nlm-20a.htm

Save Babies through Screening
http://www.savebabies.org

FPG Child Development Institute
eNews # 22 April 20, 2006 - University of North Carolina at Chapel Hill

Parents Search Online for Answers to Genetic Diagnoses

Thanks to the Human Genome Project, the genetic basis for hundreds of disorders has been discovered. Also, understanding of fundamental genetic processes at the molecular level has grown.

How do parents of children with suspected or known genetic disorders find and use this information? The Culture and Family Interpretations of Genetic Disorder Project (an ethnographic study of 106 families referred to a pediatric genetic counseling and evaluation clinic) attempts to answer this question. The study examines parents' use of online resources and notes implications for early interventionists.

FPG Snapshot 29 summarizes the study's findings, which appeared in an article by Dr. Debra Skinner and Rebecca Schaffer of FPG in the journal Infants & Young Children.

If you publish electronic or print news, feel free to reprint this information. Also, please pass along our eNews to your colleagues.

click here to download the PDF

A Guide for Patients and Health Professionals
This comprehensive manual provides a wealth of genetic education materials for patients and health professionals to increase awareness of specialty care in genetics. Please visit this page to read chapter descriptions, to download the entire Guide, or individual chapters.

http://www.geneticalliance.org/ws_display.asp?filter=resources_manual_download

PKU Care - Children with Important Dietary Restrictions
This form can be printed, filled out and left with your child’s caregivers.

click here to download Index Card for PKU Care

PACER
Through its ALLIANCE and other national projects, PACER, a national center, responds to thousands of parents and professionals each year. PACER resources make a difference in the lives of 6.5 million children with disabilities nationwide. With assistance to individual families, workshops, materials for parents and professionals, and leadership in securing a free and appropriate public education for all children, PACER's work affects and encourages families in Minnesota and across the nation.
http://www.pacer.org/

Posting of links does not indicate endorsement of the web site by the Region 4 Genetics Collaborative.