Welcome to Windows Of Hope

This web site is primarily intended to be a plain language and comprehensible information resource to enable patients and families to make practical healthcare decisions relating to the risks of recurrence and the  potential treatment options of heritable disorders.  It contains an extensive database of genetic, diagnostic and clinical information as well as links to other databases and support groups regarding single gene disorders found among plain people (Anabaptists). Together with information on current research and publications, it provides a comprehensive introduction to the relevant scientific and medical literature for scientists, physicians and health care workers as well.

 

Boys on wagonMedical genetics has come of age in the last decade to become part of mainstream medicine. Much has been learned from research on the usually rare and often chronic inherited conditions, and it is now evident that genes play a much more extensive role in health and disease than was known before.  Today, every medical school and many regional medical centers have active departments of medical genetics and increasing numbers of physicians are pursuing advanced training in the practice of clinical genetics.  And yet, large segments of the population have little comprehension of the causes and risks of genetic disease.  Few are aware of the role of genes, their mutations, and the value of genetic testing in the treatment and prevention of heritable disorders.

 

Advances in our understanding of the human genome  has enabled medical science to understand how genes function and how they cause disease.  These breakthroughs are now making it possible to treat many inherited diseases even though the promise of gene therapy is still a distant dream in most cases.  Such information, however, is sometimes slow to reach the bedside where it is most needed.  In an age where we expect people to take more personal responsibility for their health and welfare, this general lack of understanding regarding the nature of inherited disorders is a serious handicap.  Clearly, there is an enormous need for easy access to useful and comprehensible information about the principles of inheritance, how genes work, and how genetic diseases can be treated and prevented.

 

Kids on wagonWindows of Hope is an international project organized in 2000 to address this need.  It is focused on the identification, diagnosis, treatment, and prevention of genetic disorders among plain people including Amish, Mennonites, and Hutterites, collectively known as plain people or Anabaptists. It is organized into three main components: A) field work under the direction of local personnel who collect information on families; B) molecular and biological studies on genetic disorders; and C) a national, online database consisting of information regarding basic genetics as well as information on the clinical aspects of inherited disorders identified in these populations.  These activities are coordinated through the Windows of Hope Genetics Information Center located in Walnut Creek, OH (http://www.wohgeneticinfo.org/).

For additional information on genetics among plain people see:  Publications

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