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Helpful Websites

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Resource Categories

Click on the title to go to that particular set of resources.

Videos for parents and kids: A listing of links to videos about a variety of topics surrounding transplant and easing medical appointment anxiety.

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.

School-related websites: Links to sites to help with finding appropriate school accomodations and other school-related information for your child.

Digestive disease websites: Links to websites and organizations about specific digestive diseases for support and education. 

Parent websites: Other helpful sites for parents, such as help for transition adolescence to adult care.

Videos for Parents and Kids

1. "Taking Your Child's Temperature" By Nemours Healthcare.

2. "Taking Care of Your Child's Gastrostomy Tube (G-Tube)" By Nemours Healthcare. 

3. "Changing a Ostomy Pouch" by American College of Surgeons.

4. "Living with an Ostomy" Video showing the changing of an ostomy bag on an infant. 

5. "Making Medical Visits Easier for Kids" By Nemours Healthcare .

 

6. "Taking Care of Your Child's Teeth"  By Nemours Healthcare. 

7. "Does my Child Need an Antibiotic?" By Nemours Healthcare.

8. "Using Car Seats Safely" By Nemours Healthcare. 

9. "Tips for Safe Cleaning" By Nemours Healthcare. 

10. "7 Principles of Healthy Home" By Nemours Healthcare. 

 

Useful Phone Apps

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.

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.

MyGI Symptom Tracker

Learn about and track your gastrointestinal symptoms. Has helpful videos within the app.

Transplant Hero

Phone app that helps you track your immunosuppression medications.

Downloads for Children

Mommy Can Play Again

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.

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.

What Every Parent Needs to Know: A guide created by UNOS about organ transplantation.

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.  

School-Related Websites

Managing Chronic Conditions in School

Purpose: Provides resources and suggestions for students with chronic conditions on school accommodations and management.

IHPs, 504 Plans, and IEPs: What’s the Difference?

Purpose: Read about possible accommodations you can get for your child in school.

Preparing for Post-Secondary Education

Purpose: Information for students with disabilities moving onto college.

Summer Camp Listings

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.

Scholarship Programs

Purpose: Listing of possible transplant-related scholarship programs listed by UNOS Transplant Living.

Izzie's Gift of Hope Foundation

Purpose: Provides scholarships to students affected by organ donation or transplantation.

Digestive Disease-Specific Organizations and Websites for Pediatrics

American Liver Foundation

Purpose: Liver education and advocacy.

American Society of Anesthesiologists (ASA)

Purpose: Education on pain management and surgical anesthesia.

Feeding Tube Awareness Foundation

Purpose: To raise awareness about tube feeding and oral aversion therapy.

Feeding Matters

Purpose: Furthering advances in pediatric feeding disorder by accelerating identification, igniting research, and promoting collaborative care for children and families.

GI Kids

Purpose: Education on various gastrointestinal conditions for kids.

Hirschsprung's & Motility Disorders Support Network (HMDSN)

Purpose: Education and advocacy for patients with these conditions.

International Foundation for Gastrointestinal Disorders

Purpose: Education and research for gastrointestinal disorders. Has specific information on motility disorders, gastroparesis, kids' GI disorders, and more.

Necrotizing Enterocolitis Society

Purpose: Education, support, and advocacy for necrotizing enterocolitis, a leading cause of short bowel syndrome in pediatric patients.

The Oley Foundation

Purpose: Striving to enrich the lives of those living with home intravenous nutrition and tube feeding through education, advocacy, and networking.

Short Bowel Syndrome Foundation

Purpose: Education and advocacy for individuals with short bowel syndrome.

Short Bowel Syndrome Foundation of New England

Purpose: Provides education and advocacy for young patients and their families afflicted with short bowel syndrome.

Short Bowel Syndrome Cure Project

Purpose: Research and advocacy for individuals suffering with short bowel syndrome and intestinal failure.

United Ostomy Association of America (UOAA)

Purpose: Education and support for individuals living with ostomies. Online support community available.

Helpful Websites for Parents

Adolescent Health Transition Project

Purpose: Information on transitioning your child from pediatric care to adult care in the medical world.

Got Transition

Purpose: Information on transitioning your child from pediatric care to adult care in the medical world.

Healthy Children

Purpose: Provides educational materials from the American Academy of Pediatrics for parents of children of all ages 0-18 years.

Nemours for Parents

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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