Genetics Resources
General:
- Genetic Information Nondiscrimination Act (GINA) - summarizes the protections against discrimination based on a person’s genetic information in health insurance coverage and employment.
- Genetics Home Reference - new Genetics website at the National Library of Medicine for families and health care professionals.
- Genetic Alliance - an international coalition of individuals, professional and genetic support organizations that is working together to enhance the lives of everyone impacted by genetic conditions. This organization was founded by a social worker after her son was born with a congenital heart defect.
- National Organization of Rare Disorders (NORD) - a unique federation of voluntary health organizations dedicated to helping people with rare “orphan” diseases and assisting the organizations that serve them.
Clinics:
- Baylor Adult Genetics Clinic - provides evaluation, genetic testing and counseling for adults. Phone: 832-822-4293
- Genetics Clinic at Texas Children’s Hospital - Children are referred for many reasons including developmental delay or a suspected genetic condition. The first visit includes a detailed family history and a physical exam. When a diagnosis is known, families are counseled about the pattern of inheritance, complications and prognosis of the condition, risk for future pregnancy and reproductive options.
- Genetics Clinic at Ben Taub General Hospital - provides genetic evaluation and counseling for children, adults & prenatal patients.
Children: 713-873-5437
Adults: 713-873-2290
Prenatal: 713-873-3674
Down Syndrome:
- National Down Syndrome Congress (NDSC) - their mission is to provide information, advocacy and support concerning all aspects of life for individuals with Down syndrome. Phone: 1-800-232-6372
- National Association for Down Syndrome - offers information, support and advocacy.
- Down Syndrome Association of Houston
Family Health History:
- U.S. Surgeon General’s “My Family Health Portrait” - knowing your family health history is the first step in gathering information that may affect your health. This online tool will help you build your family health tree.
- Consumer Genetic Resources - a list of online resources about family health history, genetic testing and other relevant topics, compiled by the America Society of Human Genetics.
Velo-Cardio-Facial Syndrome Resources:
- Velo-Cardio-Facial Syndrome (VCFS) Educational Foundation, Inc. - an international not-for-profit organization dedicated to providing support and information to individuals who are affected by Velo-Cardio-Facial syndrome, their families, physicians and other practitioners.
- 22q and You Center - a national nonprofit voluntary health organization located within the Children's Hospital of Philadelphia.
- The International 22q11.2 Deletion Syndrome Foundation, Inc. - a non-profit organization that was founded by parents in an effort to bring awareness and support for this rare and under recognized condition.
- VCFS Texas, Inc. - provides support and resources to individuals with Velo-Cardio-Facial Syndrome (VCFS), their families, professionals, and the community in Texas.
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