General
American College of Medical Genetics - is an organization whose purpose is to improve health through medical genetics. By using the ACMG website, 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, and professional and genetic support organizations that are 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 website 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.
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.
Positive Exposure - celebrates the beauty of human difference and includes photos of individuals with genetic conditions.
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
Information Regarding Telemedicine Appointments at Texas Children's Genetics Clinic
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
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, and 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 the southeast: Houston, Cypress, Nederland, Webster.
Families for Effective Autism Treatment - this organization aims to improve the quality of life of those affected by developmental disabilities by increasing resources and providing information about Applied Behavior Analysis.
Texas Autism Council - advises and makes recommendations to the Texas Health and Human Services Committee's executive commissioner to ensure that the needs of persons of all ages with autism spectrum disorder and their families are addressed and that all available resources are coordinated to meet those needs.
Texas Children's Autism Center Monthly Newsletter Registration
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.
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
Centers for Disease Control (Cancer)
Colon Cancer Alliance - a national patient advocacy organization dedicated to ending the suffering caused by colorectal cancer.
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 -provides 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.
Family Health History
U.S. Surgeon General's My Family Health Portrait - an online tool will help you build your family health tree.
Fragile X
National Alliance on Mental Illness (NAMI) - to find national, state, and local information for helping individuals with mental health issues like the anxiety often seen with Fragile X.
Hearing Loss
National Institutes on Deafness and Other Communication Disorders (NIDCD)
Texas Health and Human Services Office of Deaf and Hard of Hearing Services - serves people with a wide variety of hearing disabilities.
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
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.
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.
Medline Plus - includes a tutorial about seizures and epilepsy.
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 - supports OI research, offers education for those living and working with people with OI, builds public awareness, and offers mutual support.
Sleep
The American Academy of Sleep Medicine - provides 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 an 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 goal 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 - promotes the prevention of spina bifida and enhances the lives of all affected.
State and Local Organizations
The Arc of Texas - information for people with intellectual and developmental disabilities.
Social Security Online - Social Security website.
U.S. Department of Labor - Disability Resources
Healthcare.gov - newest information on insurance coverage choices.
Gateway to Care - information about access to healthcare.
Texas Health and Human Services - aging, disability, and mental health services
Special Needs Resource Project - special needs resources.
Texas Medicaid & Healthcare Project - Medicaid & CSHCN information.
DI 23022.080 List of Compassionate Allowance (CAL) Conditions - quick SS disability determination categories.
Texas Association of Community Health Centers
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
Navigate Life Texas (English and Spanish) - Support and information for families that have a child with disabilities and special healthcare needs.
Texas Parent to Parent - Supports families of children of any age with disabilities, chronic illness or other special health care needs and provides trainings and conferences across the state.
Velo-Cardio-Facial Syndrome
22q and You Center - a national nonprofit voluntary health organization located within the Children's Hospital of Philadelphia.
International 22q11.2 Deletion Syndrome Foundation, Inc. - a non-profit organization that was founded by parents in an effort to bring awareness and support to 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.
Follow the latest research news from the Baylor College of Medicine.