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Resources for Patients and Families

  • Genetic Alliance
    This web site includes information on a wide variety of genetic disorders as well as a database of support groups throughout the nation. It also provides public policy information.
  • Gene Tests
    Funded by the National Institutes of Health, the web site features information regarding genetic testing and research of a multitude of genetic conditions. This web site also features a listing of clinics nationwide.
  • March of Dimes
    The primary purpose of this organization is to save the lives of babies who face premature birth, birth defects, genetic disorders, as well as other diseases that can occur in infancy. The web site offers information on a wide range of conditions, as well as timely news articles.
  • National Fragile X Foundation
    This web site offers support and education to families facing this number one cause of mental retardation. Includes a special section for the "Newly Diagnosed" as well as information for physicians.
  • Children's Tumor Foundation
    This web site provides information on Neurofibromatosis, as well as a wealth of other information and resources for patients and families, including local support group information, chat rooms and bulletin boards, and youth programs.
  • National Marfan Foundation
    This web site provides information on Marfan's Syndrome.
  • National Organization for Rare Disorders
    This national organization is an advocate for patients with rare disorders, promoting and fund raising for research and providing information to the government and medical community.
  • National PKU Alliance
    This organization works to improve the lives of families and individuals associated with PKU through Research, Support, Education, Advocacy while ultimately seeking a cure.
  • National PKU News
    News and information source for patients and families living with PKU. This web site is maintained by an experienced dietician for PKU patients, and has written several books and cookbooks on living with PKU.
  • Online Mendelien Inheritance in Man (OMM)
    Sponsored by the National Institutes of Health, this web site provides an online catalog of humane genes and genetic disorders. Primarily for the use of physicians and researchers, patients and the general public can also access basic information.
  • Prader-Willi Alliance
    The Prader-Willi Alliance of New York provides news, information, support and networking opportunities to patients, families, and the medical professionals who treat patients with Prader-Willi Syndrome.
  • Prader-Willi Syndrome Association
    This national association is a resource for education and information about Prader-Willi Syndrome to both families and medical professionals.