BDSRA has compiled a list of testing centers in the United States and several other countries. If you would like to share your diagnostic journey or support the organizations goals around better and faster diagnosis for Batten disease please reach out to us a email@example.com.
A Comprehensive Resource for families coping with birth trauma. The mission of Birth Injury Guide is to help answer the questions that parents and families have about birth injuries.
Lettercase booklets for expectant parents who've received a prenatal diagnosis of a genetic condition
BIAA's mission is to advance awareness, research, treatment, and education and to improve the quality of life for all people affected by brain injury.
Cornelia de Lange Syndrome Foundation
Their website cover medical information, including symptoms and treatment, as well as daily living topics, including counseling, abuse, college/careers, bullying and more.
Children and Adults with Attention-Deficit/Hyperactivity Disorder (CHADD) creating and implementing programs and services in response to the needs of adults and families affected by ADHD through collaborative partnerships and advocacy, including training for parents and K-12 teachers, hosting educational webinars and workshops, being an informative clearinghouse for the latest evidence-based ADHD information, and providing information specialists to support the ADHD community.
From the National Down Syndrome Congress.
Look up Diseases & Conditions (Mayo Clinic)
From the National Down Syndrome Congress
The safety of children remains the utmost priority for all NIH research studies.
English, Spanish and Vietnamese (from Informing Families) Strategies to Support Real Lives: Connecting to Resources in WA State
UCP affiliates provide services and support on a community-by-community basis, serving the unique needs of people with disabilities in their region.
22q11.2 Deletion syndrome or 22q (also referred to as Velocardiofacialsyndrome (VCFS), and/or DiGeorge syndrome) is a disorder caused by a small missing piece of the 22nd chromosome. This tiny missing portion of chromosome 22 can affect every system in the human body. 22q can be the cause of nearly 200 mild to serious health and developmental issues in children.
The Western States Regional Genetics Services Collaborative is a federally funded multi-state project that seeks to coordinate and increase access to genetic services among our states and territory. The participating states and territory are: Alaska, California, Guam, Hawaii, Idaho, Oregon, and Washington.
The diagnosis of Williams syndrome generally has two parts: 1) Clinical diagnosis based on a variety of characteristics. See the What is Williams syndrome section for details and 2) Medical/genetic test confirmation through a DNA test which will be performed on a small amount of blood from the child. There are two DNA tests that can determine if a person has Williams syndrome.