Genetics Resources in Texas

General Information

Genetic & Rare Diseases Information Center - a collaborative effort of the National Institutes of Health, The Office of Rare Diseases Research and the National Human Genome Research Institute to help people find useful information about genetic conditions and rare diseases.

Genetic Information Nondiscrimination Act (GINA) - summarizes the protections against discrimination based on a person’s genetic information in health insurance coverage and employment.

MedlinePlus Genetics - (formerly Genetics Home Reference) an online health information resource from the National Library of Medicine (NLM) for families and health care professionals.

National Organization of Rare Disorders - a unique federation of voluntary health organizations dedicated to helping people with rare “orphan” diseases and assisting the organizations that serve them.

Positive Exposure - celebrates the beauty of human difference and includes photos of individuals with genetic conditions.

Talking Glossary of Genetic Terms - more than 250 common genetic terms pronounced and explained in an easy-to-understand way by leading scientists and professionals at the National Human Genome Research Institute

Research organizations

ClinicalTrials.gov - a registry and results database of publicly and privately supported clinical studies of human participants conducted around the world.

Simons Searchlight - a research project that aims to study rare gene changes that are associated with autism and other neurodevelopmental disorders.

Undiagnosed Disease Network - a research study backed by the National Institutes of Health Common Fund that seeks to provide answers for patients and families affected by these mysterious conditions.

The John Ritter Research Program - this program is through the John Ritter Foundation for Aortic Health, which is dedicated to raising awareness of heritable aortic and vascular diseases through research, education and advocacy

State and Regional ORGANIZATIONS

The Arc of Texas - promoting, protecting, and advocating for the human rights and self-determination of Texans with intellectual and developmental disabilities

Local Chapters of The Arc of Texas - member chapters of The Arc of Texas provide support and services to meet the needs and priorities within their area. In all communities, member chapters of The Arc of Texas work to ensure that people with intellectual and developmental disabilities (IDD) are included in their home communities and can make their own decisions about their lives.

Navigate Life Texas (NLT) - created to inform and empower parents of children with disabilities or special health care needs. Healthcare, education, insurance, medical diagnoses, transition to adulthood and how to connect with other parents are among the many topics found on NLT (available in Spanish)

Mountain States Regional Genetics Network - working to ensure that individuals with genetic disorders and their families have access to quality care and appropriate genetic expertise and information (available in Spanish)

Texas Health and Human Services - aging, disability, financial, food, health, and mental health services (available in Spanish)

Texas Parent to Parent (TxP2P) - empowers families to be strong advocates through parent-to-parent support, resource referral, and education (available in Spanish)

Local Organizations

The Harris Center for Mental Health and IDD (Houston) - strives to provide high quality, efficient, and cost effective services so that persons with mental disabilities may live with dignity as fully functioning, participating, and contributing members of our community

Women Involved in Nurturing, Giving and Sharing (WINGS) (Central and South Texas) - designed to bridge the gap between diagnosis and treatment of breast cancer, providing comprehensive breast health services to women in Central and South Texas who are uninsured

Alamo Breast Cancer Foundation (ABCF) (San Antonio) - aims to end breast cancer by assisting patients, informing health professionals and policymakers, and expanding knowledge through education and community outreach

Thrive Well Cancer Foundation (San Antonio) - dedicated to finding a cure for cancer by funding cancer research, providing patient support and offering programs to improve the quality of life for patients and their families.