Helpful Pediatric
Websites
Resource Categories
Click on the title to go to that particular set of resources.
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Videos for parents and kids: A listing of links to videos about a variety of topics surrounding transplant and easing medical appointment anxiety.
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Useful phone apps: Apps for your phone that can help you and your child with this transplant journey.
Downloads for children: Downloadable materials to help children understand the transplant process and organ donation.
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School-related websites: Links to sites to help with finding appropriate school accomodations and other school-related information for your child.
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Digestive disease websites: Links to websites and organizations about specific digestive diseases for support and education.
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Parent websites: Other helpful sites for parents, such as help for transition adolescence to adult care.
Videos for Parents and Kids
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1. "Taking Your Child's Temperature" By Nemours Healthcare.
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2. "Taking Care of Your Child's Gastrostomy Tube (G-Tube)" By Nemours Healthcare.
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3. "Changing a Ostomy Pouch" by American College of Surgeons.
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4. "Living with an Ostomy" Video showing the changing of an ostomy bag on an infant.
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5. "Making Medical Visits Easier for Kids" By Nemours Healthcare .
6. "Taking Care of Your Child's Teeth" By Nemours Healthcare.
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7. "Does my Child Need an Antibiotic?" By Nemours Healthcare.
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8. "Using Car Seats Safely" By Nemours Healthcare.
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9. "Tips for Safe Cleaning" By Nemours Healthcare.
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10. "7 Principles of Healthy Home" By Nemours Healthcare.
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Useful Phone Apps
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TransplantU App: Downloadable App on the app store on your iPhone. Created by Nebraska Transplant, tells a story of the transplant process for kids. Interactive, drag and drop features. The child can read the story or the story can be read to the child.
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Simply Sayin': Application for the iPhone created by Phoenix Children's Hospital. Provides a glossary of medical terms with kid-friendly definitions as well as some fun educational illustrations. A fabulous educational tool for young children navigating a complex medical world.
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Learn about and track your gastrointestinal symptoms. Has helpful videos within the app.
Phone app that helps you track your immunosuppression medications.
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Downloads for Children
The colorful book uses the true story of a chapter mother's double lung transplant, adapted and illustrated by her two children and those of other member families from TRIO.
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A Kids Guide to Intestinal Transplant: A guide created by Transplant Unwrapped to help inform kids about the basic steps of the intestinal transplant process.
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What Every Parent Needs to Know: A guide created by UNOS about organ transplantation.
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What Every Kid Needs to Know: A guide about the basics of transplant created by UNOS.
Helpful Websites for Pediatric Patients and their Parents
This is just a listing of websites that pertain specifically to the pediatric population. If you are looking for general transplant websites, digestive disease websites for adults, and/or financial resources please visit this page.
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School-Related Websites
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Managing Chronic Conditions in School
Purpose: Provides resources and suggestions for students with chronic conditions on school accommodations and management.
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IHPs, 504 Plans, and IEPs: What’s the Difference?
Purpose: Read about possible accommodations you can get for your child in school.
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Preparing for Post-Secondary Education
Purpose: Information for students with disabilities moving onto college.
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Purpose: Transplant Living by UNOS has compiled a listing of summer camps across the country that are medically oriented. Visit each individual site for more information.
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Purpose: Listing of possible transplant-related scholarship programs listed by UNOS Transplant Living.
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Izzie's Gift of Hope Foundation
Purpose: Provides scholarships to students affected by organ donation or transplantation.
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Digestive Disease-Specific Organizations and Websites for Pediatrics
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Purpose: Liver education and advocacy.
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American Society of Anesthesiologists (ASA)
Purpose: Education on pain management and surgical anesthesia.
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Feeding Tube Awareness Foundation
Purpose: To raise awareness about tube feeding and oral aversion therapy.
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Purpose: Furthering advances in pediatric feeding disorder by accelerating identification, igniting research, and promoting collaborative care for children and families.
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Purpose: Education on various gastrointestinal conditions for kids.
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Hirschsprung's & Motility Disorders Support Network (HMDSN)
Purpose: Education and advocacy for patients with these conditions.
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International Foundation for Gastrointestinal Disorders
Purpose: Education and research for gastrointestinal disorders. Has specific information on motility disorders, gastroparesis, kids' GI disorders, and more.
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Necrotizing Enterocolitis Society
Purpose: Education, support, and advocacy for necrotizing enterocolitis, a leading cause of short bowel syndrome in pediatric patients.
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Purpose: Striving to enrich the lives of those living with home intravenous nutrition and tube feeding through education, advocacy, and networking.
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Short Bowel Syndrome Foundation
Purpose: Education and advocacy for individuals with short bowel syndrome.
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Short Bowel Syndrome Foundation of New England
Purpose: Provides education and advocacy for young patients and their families afflicted with short bowel syndrome.
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Short Bowel Syndrome Cure Project
Purpose: Research and advocacy for individuals suffering with short bowel syndrome and intestinal failure.
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United Ostomy Association of America (UOAA)
Purpose: Education and support for individuals living with ostomies. Online support community available.
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Helpful Websites for Parents
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Adolescent Health Transition Project
Purpose: Information on transitioning your child from pediatric care to adult care in the medical world.
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Purpose: Information on transitioning your child from pediatric care to adult care in the medical world.
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Purpose: Provides educational materials from the American Academy of Pediatrics for parents of children of all ages 0-18 years.
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Purpose: Provides educational materials about a wide variety of health conditions geared toward supporting parents. Also has a child and teen site with similar information in terms they can understand.
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