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The Joseph P. Kennedy, Jr. Foundation’s Understanding a Down Syndrome Diagnosis is an accurate, balanced, and up-to-date booklet for use when delivering a diagnosis of Down syndrome and is part of the National Center for Prenatal and Postnatal Down Syndrome Resources at the University of Kentucky’s Human Development Institute (HDI). The booklet is the only prenatal resource to have been reviewed by representatives of the national medical and Down syndrome organizations and is available in both print and digital formats. You can request a printed copy through your medical provider or download an ePub for your smartphone, tablet, or desktop.

Understanding a Down Syndrome Diagnosis covers the following:

  • Available health and education services;
  • Common medical conditions for babies with Down syndrome;
  • Information about pregnancy options;
  • Helpful resources about the condition;
  • Spanish translation included in all booklets;
  • Optimization for different reading levels.

 

Get the booklet now.

 

Physician and Scholar Statement of Support

“Expectant parents deserve accurate and up-to-date information about Down syndrome. We endorse “Understanding a Down Syndrome Diagnosis” as the most balanced material that healthcare providers should provide to expectant parents following a prenatal diagnosis. This material was uniquely prepared with assistance from The Down Syndrome Consensus Group, including representatives of the American Congress of Obstetricians and Gynecologists, American College of Medical Genetics and Genomics, the National Society of Genetic Counselors, the National Down Syndrome Congress, and the National Down Syndrome Society.”

  1. Jennifer Meyers Bekins, MS, CCC-SLP Speech-Language Pathologist, The Thomas Center for Down Syndrome, Cincinnati Children’s Hospital Medical Center
  2. Elizabeth Boatwright, MD, MDiv, Chair, Research Committee, Down Syndrome Network Arizona
  3. Patricia Bornick RNC, MSN, Fetal Care Center of Tampa Bay Tampa General Hospital
  4. Campbell K. Brasington, MS, CGC, Genetic Counselor and Clinical Coordinator for the Down Syndrome Clinic at Carolinas Medical Center
  5. Frank Buckley, CEO, Down Syndrome Education International
  6. Chantalle Buhl, MS, CGC, Certified Genetic Counselor
  7. John C. Carey, MD, MPH
  8. Sarah Colosimo, MS, CGC, Certified Genetic Counselor
  9. Nevena Cvjetkovic, MS, CGC, Certified Genetic Counselor
  10. Wendy DiNonno, MS, CGC, Certified Genetic Counselor
  11. Anne Marie Dolinish-Meltzer, RN, BSN, Clinical Coordinator, Eastern PA Down Syndrome Center
  12. Martha Dudek, MS, CGC, Senior Associate in Obstetrics and Gynecology, Vanderbilt University School of Medicine
  13. George H. Durham II, MD, FAAP
  14. Steven M. Eidelman, H. Rodney Sharp Professor of Human Services Policy and Leadership, Department of Human Development and Family Studies, College of Education and Human Development and Faculty Director, The National Leadership Consortium on Developmental Disabilities, University of Delaware
  15. Richard Ferrante, PhD, Co- Chair, Down Syndrome Consensus Group
  16. Jill Fonda, MS, CGC, Certified Genetic Counselor
  17. Janis Gonzales MD, MPH, FAAP, Medical Director, Children’s Medical Services, New Mexico Department of Health
  18. James E. Hunt, MD, Coordinator, Special Needs Anesthesia Services, UAMS
  19. George Jesien, PhD, Executive Director, Association of University Centers on Disabilities (AUCD)
  20. Harold Kleinert, EdD, Executive Director, University of Kentucky Human Development Institute
  21. Clarissa Kripke, MD, Clinical Professor, UCSF Family and Community Medicine
  22. Terri Lefler, MS, CGC, Certified Genetic Counselor
  23. Len Leshin, MD, Pediatrician and Editor of Down Syndrome: Health Issues (ds-health.com)
  24. Joanne Mackey, RN, MSN, CPNP, Down Syndrome Clinic, Duke University Medical Center
  25. Nirupama Madduri, MD, Assistant Professor of Pediatrics, Division of Developmental Medicine, Vanderbilt University
  26. Jessica McCannon, MD, Physician, Down Syndrome Program, Massachusetts General Hospital
  27. Melanie McDermet, MS, CGC, Certified Genetic Counselor
  28. Dipankar Mukhopadhyay, MD, Pediatrician
  29. Joanne Nguyen, MD
  30. Kathryn K.Ostermaier MD, FAAP, Medical Director of the Down Syndrome Clinic of Houston, Assistant Professor of Pediatrics, Baylor College of Medicine/Texas Children’s Hospital
  31. Randall Phelps, MD, PhD, Developmental and Behavioral Pediatrician, Child Development and Rehabilitation Center Institute on Development and Disability, Oregon Health and Science University
  32. Amber Peterson, MS Certified Genetic Counselor
  33. Alison Piepmeier, PhD, Director of Women’s and Gender Studies, College of Charleston
  34. Mary Pipan, MD, Clinical Director, Trisomy 21 Program, The Children’s Hospital of Philadelphia
  35. Daniel Riconda, MS, CGC, Certified Genetic Counselor
  36. Nancy Roizen, MD, Director, Down Syndrome Clinic, UH/Rainbow Babies and Children’s Hospital
  37. Kim Schadt, MSN, CRNP, CCRP, Assistant Director, Trisomy 21 Program, The Children’s Hospital of Philadelphia
  38. Allie Schwartz, MD, Co-Director, Down Syndrome Program, Massachusetts General Hospital
  39. Brian Skotko, MD, MPP, Co-Director, Down Syndrome Program, Massachusetts General Hospital
  40. David S. Smith, MD, Director, Down Syndrome Clinic of Wisconsin
  41. Quinn Stein, MS, CGC, Senior Genetic Counselor, Sanford Health, Sioux Falls, SD
  42. Nasreen Talib, MD MPH, Medical Director Down Syndrome Clinic Program, Children Mercy Hospital, Kansas City MO
  43. Angela Trepanier, MS, CGC, Co-Director, Genetic Counseling Program, Wayne State University
  44. Tracy L. Trotter, MD, FAAP, Pediatrician
  45. Janice Zunich, MD, Director, Genetics Center, Indiana University School of Medicine — Northwest