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Genetics - Evenings with Genetics

Houston, Texas

Evenings with Genetics
Evenings with Genetics
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Resources

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 U.S.
  • American Society of Human Genetics - a professional genetics organization that provides education to the public.
  • Centers for Disease Control (Pediatric Genetics)
  • Clinical Trials - 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 (ORDR) and the National Human Genome Research Institute (NHGRI) 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.
  • Telling Stories - a web-based multi-media education resource that uses real-life stories from the public and professionals to promote knowledge and understanding of genetics and how it impacts people's lives.

Genetics Clinics:

  • 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

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 TX, 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:
  • Texas Children’s Hospital:

Alzheimer's Disease:

Cholesterol, Lipids & Heart Disease:

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.

Cancer Genetics:

Congenital Heart Defects:

Down Syndrome:

Family Health History:

Fragile X:

Hearing Loss

Marfan Syndrome:

  • National 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.

Noonan, Cardio-Facio-Cutaneous and Costello Syndromes:

  • Noonan Syndrome: The Noonan Syndrome Support Group, Inc. is committed to providing support, current information, and understanding to those affected by Noonan syndrome.
  • 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.

Parental Stress

  • 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
  • BCM and TCH Clinics:
    • Psychology Service: 832-822-3700
    • Psychiatry Service: 832-822-3750

Rett Syndrome:

Seizures and Epilepsy:

Short Stature and Dwarfism:

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 Web site 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 on Sleep Disorders Research (NCSDR) - The NCSDR, located within the National Heart, Lung, and Blood Institute (NHLBI) of the National Institutes of Health (NIH), seeks to fulfill its goal of improving the health of Americans by serving four key functions: research, training, technology transfer, and coordination.

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

State and Local Orgs:

Velo-Cardio-Facial Syndrome:

Williams Syndrome:

  • Williams Syndrome Association (WSA) - 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.

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