Finding useful health information on the Internet can be difficult, but we’re here to help. This page gathers quality information from trusted sources. You can learn more about the disease, visit handpicked websites, and find resources to help you in your daily life. Need more information? Click the menu on the left to find more!
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Medical Disclaimer
The medical information on this site is provided as an information resource only, and is not to be used or relied on for any diagnostic or treatment purposes. This information is not intended to be patient education, does not create any patient-physician relationship, and should not be used as a substitute for professional diagnosis and treatment.
8p23.1 Duplication Syndrome
Overview
8p23.1 duplication syndrome is a rare genetic condition. This condition results from a mutation or error in a person’s DNA or genes. This can cause birth defects such as heart problems, as well as speech delays and behavioral problems. Although there is currently no cure for 8p23.1 duplication syndrome, there are various resources to help manage the condition and treat birth defects. Doctors seek help from various therapists and community services to provide support and care for families affected by 8p23.1 duplication syndrome. This condition appears about once in 64,000 births.
Trusted Medical Sites
Genetic & Rare Diseases Information Center (GARD)
GARD provides the public with access to current, reliable, and easy-to-understand information about rare or genetic diseases in English or Spanish.
Support Organizations
Support organizations can provide help and guidance in areas such as peer matching, education and training, and therapy and counseling.
Disease Resources
Resources can help guide your quest for factual and reliable information.
State Agencies Addressing Disabilities
Resources by state that can help families and professionals address disability issues
Support the Sexual Health of Young People Experiencing I/DD
Sexual Health Equity for Individuals with Intellectual/Developmental Disabilities (SHEIDD) Project
Youth Sexual Health Equity Program, Multnomah County Health Department
May 2018
A Resource Collection on Trauma-Informed Care
Comprehensive information on: Basic information about trauma; basic principles that define trauma-informed care; trauma and specific populations; building trauma-informed schools; and responding to disasters.
Health Care and the Medical Home
Resources from The National Center for Medical Home Implementation about the medical home–what it is, how practictioners can work with families to create a medical home for a child or youth with disabilities affecting health, and much more
TRANSITION: Health & Wellness Resources
A collection of resource curated from the National RAISE Center, which focuses on transition to adulthood for youth/young adults with disabilities, ages 14 and up.