Genetics - Clinical and Metabolic

General Genetic Information:

• My Family Health Portrait (How to take your family history)
• Genetic Home Reference
• National Organization for Rare Disorders – NORD
• Genetic Alliance
• National Human Genome Research Institute
• Genetic Science Learning Center
• GeneTests
• Online Mendelian Inheritance in Man - OMIM
• The National Institutes for Neurological Disorders and Stroke
• Syndromes Without a Name - SWAN
  • Austin Chapter
  • National Organization

Support Groups – Disease Specific:

• Angelman Syndrome
  • Angelman Syndrome Foundation
• Biotinidase Deficiency
  • Biotinidase Deficiency Family Support Group
• Chromosome Disorders
  • UNIQUE – Rare Chromosome Disorder Support Group
  • Chromosome Disorder Outreach
  • Chromosome 18 Registry and Research Society
  • Citogenética básica (Basic Chromosome Information in Spanish)
• Congenital Adrenal Hyperplasia
  • CARES Foundation
  • CAH Education & Support Network
  • National Adrenal Diseases Foundation
• Craniofacial Abnormalities and Syndromes
  • Children’s Craniofacial Association
  • About Face
• Cri du Chat  (5p- Syndrome)
  • UK Cri Du Chat Syndrome Support Group
  • 5p- Support Group
• Down Syndrome
  • The National Down Syndrome Society
  • Down Syndrome Association of Central Texas
  • Down Syndrome Health Issues
  • National Down Syndrome Congress
• Dwarfism and Short Stature
  • Little People of America
  • The MAGIC Foundation for Children’s Growth
• Ehlers-Danlos Syndrome
  • Ehlers Danlos National Foundation
• Fatty Acid Oxidation Disorders
  • FOD Family Support Group
• Fragile X Syndrome
  • The National Fragile X Syndrome Foundation
  • FRAXA Research Foundation
• Galactosemia
  • Parents of Galactosemic Children, Inc.
• Glycogen Storage Diseases
  • Association for Glycogen Storage Disease US
• Glutaric Acidemia
  • International Organization of Glutaric Aciduria
• Hereditary Cancer Syndrome Support Groups
  • FORCE: Facing Our Risk Empowered (Hereditary Breast and Ovarian Cancer Syndrome)
  • Be Bright Pink (Young women with Hereditary breast Cancer)
  • VHL Family Alliance (Von Hippel Lindau Syndrome)
• Klinefelter Syndrome
  • Klinefelter Syndrome an Orientation
  • S&A - Knowledge Support & Action (Klinefelter Syndrome)
• Glutaric Acidemia Type I
  • International Organization of Glutaric Aciduria (IOGA)
• Huntington Disease
  • Huntington Disease Society of America
  • The Huntington Disease Support Group
  • The Huntington Disease Advocacy Center
  • HD Lighthouse
  • Huntington Disease Study Group
• Maple Syrup Urine Disease
  • MSUD Family Support Group
• Marfan Syndrome
  • The National Marfan Foundation
• Mitochondrial Diseases
  • United Mitochondrial Disease Foundation
  • Mitochondrial Disease Support Group Online
• Mucopolysaccharidoses
  • The National MPS Society
• Muscular Dystrophy
  • Muscular Dystrophy Association
  • Parent Project Muscular Dystrophy
  • Duchenne Connect
• Neurofibromatosis Type 1 and 2
  • Children’s Tumor Foundation
  • Texas Neurofibromatosis Foundation
  • Neurofibromatosis Inc.
• Organic Acidemias
  • Organic Acidemia Association
• Osteogenesis Imperfecta
  • Osteogenesis Imperfecta Foundation
• Phenylketonuria (PKU)
  • National PKU Alliance
  • National PKU News
  • North Texas PKU Organization
  • PKU Social Network
  • Children’s PKU Network
• Prader Willi Syndrome
  • Prader Willi Syndrome Association
• Propionic Acidemia
  • Propionic Acidemia Foundation
• Rett Syndrome
  • International Rett Syndrome Foundation
• Turner Syndrome
  • Central Texas Turner Syndrome Chapter
  • United States Turner Syndrome Society
• Urea Cycle Disorders
  • National Urea Cycle Disorders Foundation
• Velocardiofacial Syndrome or Deletion Chromosome 22q11 Support Groups
  • The International 22q11 Deletion Foundation, Inc.
  • Chromosome 22 Central
  • Velo-Cardio-Facial Syndrome Educational Foundation, Inc.
• Wolf-Hirschhorn Syndrome (4p- Syndrome)
  • 4p- Support Group
  • Wolf Hirschhorn Syndrome Trust for the UK and Ireland

Resources:

• Texas Newborn Screening
• Texas Parent to Parent
• Early Childhood Intervention – Texas
• Genetic Information Non Discrimination Act (GINA)
• Accommodating Children with Special Dietary Needs in the School Lunch Programs
  • USDA - Federal
  • Texas
• Women, Infants and Children Program
• STAR-G: Screening, Technology and Research in Genetics
• Save Babies through Screening Foundation