Diagnosis resources

Batten Disease Support and Research Association

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 info@bdsra.org.

Birth Injury Guide

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.

Booklets about prenatal diagnosis of a genetic condition

Lettercase booklets for expectant parents who've received a prenatal diagnosis of a genetic condition

Brain Injury Association of America

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.

CdLS Society

Cornelia de Lange Syndrome Foundation

Cerebral Palsy Guidance

Their website cover medical information, including symptoms and treatment, as well as daily living topics, including counseling, abuse, college/careers, bullying and more.

CHADD - Children and Adults with Attention-Deficit/Hyperactivity Disorder

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.

Discussing Down Syndrome: A Physician’s Guide

From the National Down Syndrome Congress.

Health Manager

Look up Diseases & Conditions (Mayo Clinic)

Information for New and Expectant Parents

From the National Down Syndrome Congress

NIH Website on Children and Medical Research

The safety of children remains the utmost priority for all NIH research studies.

Resources in Washington State

English, Spanish and Vietnamese (from Informing Families) Strategies to Support Real Lives: Connecting to Resources in WA State

United Cerebral Palsy (UCP)

UCP affiliates provide services and support on a community-by-community basis, serving the unique needs of people with disabilities in their region.

Velo-Cardio-Facial Syndrome Educational Foundation, Inc.

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.

Western States Genetic Services Collaborative

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.

Williams Syndrome Office

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.