General

American College of Medical Genetics - is an organization which purpose is to improve health through medical genetics. By using the ACMG web site, one can find genetic services and providers around the United States.

American Society of Human Genetics - a professional genetics organization that provides education to the public.

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

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.

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 web site at the National Library of Medicine 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.

Genetics/Genomics Competency Center for Education - a repository of web-based professional education resources.

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.

Glossary of Genetic Terms

Medline Plus - a service of the U.S. National Library of Medicine and National Institutes of Health. Health information from the world's largest medical library, the National Library of Medicine.

“My Family Health Portrait” - a tool from the US Surgeon General. 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.

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

Benefits of a Genetic Evaluation: English/Spanish

Genetics Providers & Services

Baylor Adult Genetics Clinic - provides evaluation, genetic testing and counseling for adults. Phone: (713) 798-7820.

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. Phone: (832) 822-4293

Ben Taub Hospital Prenatal Genetics Clinic - provides genetic evaluation and counseling for prenatal patients. Phone: (713) 873-3674.

BCM Prenatal Genetics Clinic - Phone: (832) 826-7500, option 4

TDSHS Genetics Providers List

Find a genetic counselor near you (National Society of Genetic Counselors)

Find a Genetic Service (American College of Medical Genetics)

Autism

Autism Speaks - supports awareness, advocacy, science and directs families to local resources and research studies.

Autism Society of America - family support, awareness/advocacy, sharing research news, the statewide chapters broken down by region, eight in Texas, four in southeast: Houston, Cypress, Nederland, Webster.

Families for Effective Autism Treatment - their mission is to improve the quality of life of those affected by developmental disabilities by increasing resources and providing information about Applied Behavior Analysis.

Texas Autism Advocacy - family support, advocacy and legislative updates.

Texas Council on Autism and Pervasive Developmental Disorders - established in 1987, the mission is to advise and make recommendations to state agencies and the state legislature to ensure that the needs of persons of all ages with autism and other pervasive developmental disorders and their families are addressed and that all available resources are coordinated to meet those needs.

Research Studies:

Autism Genetic Resource Exchange

Simons Simplex Collection - is a core project and a new resource of the Simons Foundation Autism Research Initiative that will provide the scientific community access to genetic and phenotypic information on 2000 families.

Interactive Autism Network

Texas Children’s Hospital:

Autism Center: (832) 822-3704

Neurology Clinic: (832) 822-3554

Meyer Center for Developmental Pediatrics: (832) 822-3400

Genetic Clinics: (832) 822-4293

Alzheimer's Disease

Alzheimer Association - the leading voluntary health organization in Alzheimer care, support and research. Phone: (800) 272-3900

Baylor Alzheimer's Disease and Memory Disorders Center - offers a listing of local, state, national and international resources.

Cancer Genetics

American Cancer Society

Centers for Disease Control (Cancer)

Colon Cancer Alliance - a national patient advocacy organization dedicated to ending the suffering caused by colorectal cancer.

Lynch Syndrome International

National Cancer Institute

Cholesterol, Lipids & Heart Disease

American Dietetic Association - offers healthy eating tips.

American Heart Association - a not-for-profit voluntary health organization funded by private contributions that are committed to reducing disability and death from cardiovascular diseases and stroke.

Congenital Heart Defects

American Heart Association - a not-for-profit voluntary health organization funded by private contributions that are committed to reducing disability and death from cardiovascular diseases and stroke.

Chromosome Disorders

UNIQUE - a source of information and support to families and individuals affected by any rare chromosome disorder.

Chromosome Disorder Outreach - education, advocacy, information, and support for all those affected by a rare chromosome disorder.

Down Syndrome

National Down Syndrome Congress - 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.

Genetics for Everyone - information about family health history, genetic testing and other relevant topics, compiled by the America Society of Human Genetics.

Genes in Life - A booklet on discussing health with family members, sample questions to ask, and a guide for collecting and organizing the information to share with your healthcare provider: order free booklets for family members.

Fragile X

National Fragile X Foundation

Fragile X Society

FRAXA Research Foundation

National Alliance on Mental Illness (NAMI) - to find national, state, local information for helping individuals with mental health issues like the anxiety often seen with Fragile X.

Marfan Syndrome

The Marfan Foundation - a non-profit health organization dedicated to saving lives and improving the quality of life for individuals and families affected by Marfan syndrome and related disorders.

Mental Health Resources

Crisis line numbers:

 Support4Hope: (1) (800) 692-4039; (1) (800) 936-8097; (1) (800) 793-2273

(1) (800) TALK

Phone numbers for help for children with developmental disorders:

Harris County MHMRA: (713) 970-4444

Gulf Coast Center (Brazoria & Galveston): (877) 226-8780

Texana Center (Fort Bend, Austin, Waller, Colorado, Wharton, Matagorda): (281) 342-0090

DePelchin Children’s Center: (713) 730-2335

Baylor College of Medicine and Texas Children's Hospital Clinics:

Psychology Service: (832) 822-3700

Psychiatry Service: (832) 822-3750

Noonan, Cardio-Facio-Cutaneous and Costello Syndromes

Noonan Syndrome Foundation

Cardio-Facio-Cutaneous (CFC) Syndrome: CFC International is a support group for families and others whose lives are touched by this very rare syndrome.

Costello Syndrome: Costello Syndrome Support Group is an “e-grass-roots” parent support group that shares information about Costello Syndrome (CS) with parents and health providers around the world.

Rett Syndrome

Blue Bird Circle Clinic Rett Center at Baylor College of Medicine - is involved in three major activities: Caring, Education, & Research. Phone: (832) 822-RETT (7388) Toll-free: (1) (888) 430-7388. 

Rettsyndrome.org

Seizures and Epilepsy

Epilepsy Foundation of America - a national voluntary agency dedicated solely to the welfare of the almost 3 million people with epilepsy in the U.S. and their families.

Epilepsy Foundation of Texas

Medline Plus - includes a tutorial about seizures and epilepsy.

National Institute of Neurological Disorders and Stroke

Short Stature and Dwarfism

Little People of America - a nonprofit organization that provides support and information to people of short stature and their families.

Osteogenesis Imperfecta Foundation - their mission is to support OI research, offer education for those living and working with people with OI, build public awareness, and offer mutual support.

Sleep

The American Academy of Sleep Medicine - provides the facts about sleep, sleep disorders, treatments and services. Find accurate information and the latest news from the leader in sleep medicine. The website includes an online discussion forum. In the forum you can interact with other visitors to the site.

The National Sleep Foundation - NSF is dedicated to improving public health and safety by achieving understanding of sleep and sleep disorders, and by supporting sleep-related education, research, and advocacy.

National Center for Complementary and Integrative Health – Sleep Disorders page

Small for Gestational Age

March of Dimes - to improve the health of babies by preventing birth defects, premature birth and infant mortality. We carry out this mission through research, community services, education and advocacy to save babies' lives.

Spina Bifida

Spina Bifida Association - serves adults and children who live with the challenges of spina bifida (English/Spanish).

Spina Bifida Association of Houston Gulf Coast - the mission is to promote the prevention of spina bifida and to enhance the lives of all affected.

State and Local Organizations

Project DOCC Houston - a resource guide for parents of children with disabilities who live in Houston and surrounding areas.

The Arc of Texas - information for people with intellectual and developmental disabilities.

Social Security Online - Social Security website.

Texas Department of Aging and Disability - aging and disability services. The wait list is long, so enter name of child immediately upon diagnosis.

U.S. Department of Labor - Disability Resources

Healthcare.gov - newest information on insurance coverage choices.

Gateway to Care - information about access to healthcare.

Texas Department of Assistive and Rehabilitative Services (DARS) - rehabilitation/employment services.

Special Needs Resource Project - special needs resources.

Texas Department of Insurance

Texas Department of State Health Services - Community Mental Health

Texas Medicaid & Healthcare Project - Medicaid & CSHCN information.

DI 23022.080 List of Compassionate Allowance (CAL) Conditions - quick SS disability determination categories.

The Texas Association of Community Health Centers (TACHC)

Texas Health and Human Services Commission

Velo-Cardio-Facial Syndrome

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.

Williams Syndrome

Williams Syndrome Association - comprehensive resource for people and families living with Williams Syndrome as well as doctors, researchers, and educators. Phone: (1) (800) 806-1871. South Texas Region Representative: (713) 417-9418.