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The Beta-Thalassemia Project

   
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A joint project of the medical, scientific, and genealogy communities

In 1993, Dr. Charles Scriver (Montreal) and Dr. Ariella Oppenheim (Jerusalem) independently discovered that my family and the Itkin family of Jerusalem carry a newly identified mutation of this trait. As a result, I launched a project for which I need the participation of genealogists, the press, and the medical and scientific community around the world.

The first medical paper on the project was published in the scientific journal Human Mutation.

Stanley M. Diamond and Shimon Itkin of Jerusalem discuss efforts to genealogically connect their two families, both carrying the unique FS20/21 mutation of the beta-thalassemia trait.
Jerusalem, Israel, 30 December 1998.

This research is being done in conjunction with the McGill University-Montreal Children's Hospital Medical Research Institute and Hebrew University-Hadassah Hospital, Department of Hematology, Jerusalem. The first medical paper on the project was published in the scientific journal Human Mutation, 9:86-87 (January 1997): "Probable Identity by Descent and Discovery of Familial Relationships by Means of a Rare Beta-Thalassemia Haplotype."

On-site research in Poland and the cooperation of the Polish State Archives and key Civil Records Offices enabled me to document more than 50 additional families who may be at risk. With descendants of so many families to be traced and contacted, my task, already immense, has now become virtually unmanageable. I need help from my fellow genealogists, their friends, relatives, and physicians - anyone who might have knowledge of an Ashkenazic carrier.

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Human Mutation, 9:86-87 (January 1997): "Probable Identity by Descent and Discovery of Familial Relationships by Means of a Rare Beta-Thalassemia Haplotype."

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Date revised: August 03, 2004