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Resources
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Dissemination, Education and Marketing Products
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Genetics Education Materials for School Success (GEMSS)
Visit the website: www.gemssforschools.org. This is a work in progress and we invite feedback! Please consider completing the survey found on the site. GEMSS was created for teachers, therapists, counselors, parents and schools so they can best support students with genetic conditions. This new website is unique; it houses a library of useful tools and tips for educational and classroom support, dietary needs, field trips, sports and much more, all in one place. The aim of GEMSS is to make school a successful and positive experience for all students who have genetic conditions. The website includes information on supporting students with: - 22q Deletion
- Down Syndrome
- Fragile X
- MCAD
- PKU
- Sickle Cell Disease
- VLCAD
- Williams Syndrome
- Undiagnosed/Other
More conditions will be added in the future. Before developing the website, the Dissemination, Education and Marketing work group conducted focus groups in elementary schools across New England to vet the project. Read the full report.
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Newborn Screening Brochures in Multiple Languages
The following brochures developed by New England Public Health Genetics Education Collaborative (NEPHGEC), give the reader an overview of the newborn screening process and the genetic conditions for which the panel screens, available in multiple languages. Click on the links below to download the PDFs.
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Family Health History Awareness
link This slide presentation was developed by the NEGC Dissemination, Education and Marketing (DEM) Work Group. This includes a comprehensive slide library and training/public awareness modules to meet the needs of varied target audiences (e.g. general public, nurses, social workers, public health professionals, students). The new modules were field-tested and were made available in April 2009.
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NE Genetics Resources Directory
link The directory lists service information and key sections are translated into Spanish for online posting.
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Understanding Genetics Guide for Patients and Professionals
link A New England Guide for Patients and Health Care Professionals (PDF) 2007.
Medical Home Products
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Family Care Plan (pending completion)
Last year the Medical Home group piloted a communication tool designed to improve shared care between families, primary physicians, and specialists. Unfortunately we weren't able to test it out as much as we had hoped, so this year we are continuing to pilot it at Children's Hospital Boston with Susan Waisbren, PhD. We're looking for additional informal feedback - could you help? - If you work in a clinic in a capacity to utilize this tool, please try it out and give us your thoughts. Is it feasable? What are the positives? the challenges?
- We also perceived that families could drive the use of this tool. Would you be willing to try?
Download Now
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The Medical Home: Building a New Brand for Primary Care
link power point presentation by Dr. Carl Cooley in June 2008
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Parents' Role in Specialty Referrals: Views from Both Sides of the Exam Table
LINK This abstract has been accepted for a presentation at the Pediatric Academic Society in Denver in May, 2011. The work summarizes the 2009-2010 Innovative Project to develop and pilot a practical care plan to be used by parents, PCP, and specialty physicians to improve communication and care.
Quality Improvement Products
Transition Products
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Transition Toolkit
This toolkit was developed to help teenagers and young adults prepare for transitioning to the adult health care system. The links below go to the New England Consortium of Metabolic Programs website at Children's Hospital Boston, where the toolkit was developed with Innovative Project award funding from the NEGC.
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Galactosemia: Educators' Resources
These resources, developed at Children's Boston, are for teachers working with students who have galactosemia: - Understanding Galactosemia
- an introductory guide for educators, featuring a basic description of galactosemia, suggested teaching strategies, classroom managment ideas, and additional resources
- Galactosemia - Resources for Educators
- a detailed guide for educators with in-depth information about galactosemia, about special challenges for students with the condition, and featuring information about therapies, classroom environment, lesson planning, teaching technologies, and other resources
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Moving Forward: Your Guide to Galactosemia and POI
link This comprehensive five-part guide, produced at Children’s Hospital Boston, contains sections for teens and women who have galactosemia and POI, and for their family members. The guide explains the symptoms and underlying causes in easy-to-understand terms, and outlines ways of getting the care and support you need. It also provides a list of resources, and a glossary of medical terms.
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A Guide for Prenatal Educators
link This eleven-page booklet developed at Children's Boston contains information and resources based on recommendations by the American Academy of Pediatrics. Included information and resources for parents, as well as information about each metabolic disorder including incidence rate, a brief definition, and recommmended treatment options.
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PKU Toolkit
link This toolkit developed at Children's Boston is designed to be a personal guide for teens and young adults with PKU, including comprehensive information about nutrition, diet, treatment, and lifestyle issues. It provides information, resources, checklists, and quizzes to help you better manage your PKU. Also included is information about new, more convenient and tasty options in PKU formula and low-protein foods. Reading this toolkit can also be useful for family, friends and significant others of adults with PKU.
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Transition Efforts in New England
link This summary of the efforts to promote Transition in each of the New England states is a work-in-progress. Please let us know of any undates. (2010)
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Teen Challenge! Summary Reports
Products from our Special Projects
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