La Historia de SOFT

“Los comienzos” La historia de SOFT: Organización  de Apoyo para las Trisomías 18, 13 y Trastornos Relacionados. Escrito por Kris Holladay. Recuerdo a…Brandy Woodcox. Nunca olvidaremos su nombre en nuestra familia. Fue en noviembre de 1977 cuando Kari tenía tan solo dos meses de vida. Le preguntábamos a todos-incluso a desconocidos en la calle-si había…

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Attitudes Toward Hypothetical Uses of Gene-Editing Technologies

The following paper is an interesting article published recently in The CRISPR Journal. The main author, Erika Snure Beckman, performed this work for a Master’s degree while a genetic counseling student at Stanford University. She and her colleagues analyzed the views of parents of persons with trisomy 21, trisomy 18, and trisomy 13 syndromes toward the new gene-editing technologies. The…

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Trisomy 13 – A Handbook for Families

When your physician first tells you that your baby may have trisomy 13 (Patau syndrome) or that this diagnosis is suspected, you will be overwhelmed with questions. The first question usually is “What is trisomy 13?” This book was written to answer some of these questions, to share insights of parents of children with trisomy…

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Trisomy 18 – A Handbook for Families

When your Physician first tells you that your baby may have Trisomy 18 (Edward syndrome) or that this diagnosis is suspected, you will be overwhelmed with questions. The first question usually is, “What is trisomy 18”? This guidebook was written to answer some of these questions, to share insights of other parents of children with…

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The Care Book (English, Spanish, Portuguese)

Care of the Infant and Child with Trisomy 18 or Trisomy 13 was written for parents who are expecting, living with or remembering a child affected with these disorders. The greater portion of text covers problems and management of care of the live born infant and living child.  It has been continually updated as new…

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