Transition Tools and Resources

General Health Transition Resources

Got Transition:  Youth & Families

Got Transition is a national organization focused on youth health transition.  Many resources for youth and families are available on their website. 

Center for Young Women's Health and Young Men's Health

Information for young adults on a variety of health topics, from Boston Children's Hospital.

MedlinePlus Teens' Page

Links to a wealth of teen health resources

Smokefree Teen

Information for teens on smoking, and resources for quitting.

Video:  This is Health Care Transition

Growing up and becoming an adult is difficult for all youth, but can be especially challenging for young people with special health care needs. This video was developed to help youth and young adults with chronic health conditions and their families be better prepared for adulthood, especially the move from pediatric to adult-oriented health care. This video was developed through a contract from Children's Medical Services to the University of Florida. Run time: 29 minutes. (2007)

Autism Spectrum Disorder (ASD)

AASPIRE Healthcare Toolkit: Primary Care Resources for Adults on the Autism Spectrum and their Primary Care Providers

This toolkit contains useful information for adults with Autism Spectrum Disorders related to health care.  There is an interactive function that may be used to create a document which can be shared with health care providers.

Transition to Adulthood: A Health Care Guide for Youth and Families

Information from the Autism Self Advocacy Network.

Autism Speaks Transition Toolkit:  Health Section

Health transition information for young adults and families dealing with ASD transitions.

Bone Marrow/Solid Organ Transplant

Supporting your teenager through transplant

Information from Be The Match for parents of teenagers who are going through bone marrow/stem cell transplants.

Cancer

 Adolescents and Young Adults with Cancer

This is an extensive resource and link list from the National Cancer Institute.

Camps for Children/Young Adults with Cancer (and siblings)

Want to go to camp, but wondering how to handle health needs?  Camps are a great way for transitioning teens and young adults to start becoming more independent in managing and learning about health conditions like cancer.  This list comes from UW Madison's Pediatric Hematology, Oncology, and Bone Marrow Transplant program.

Stupidcancer.org

Stupidcancer.org offers information and resources for teens and young adults affected by cancer.

 Transitioning to College with a Chronic Illness

This article was written by a University of New Hampshire student who started college while being treated for leukemia.  It raises multiple health care transition issues.

College Health and Transition

It's an important part of health transition when young adults with special health care needs or chronic conditions head off to college.  These resources can help!

Impact of Chronic Illness on College Planning

Information on how to plan for college health needs when you have a chronic illness, from the Center for Young Women's Health at Boston Children's Hospital.  Applies to guys too!!

Healthy Tips for the College Freshman

Information for teens and parent about health issues during the transition to college, from the American Academy of Pediatrics.

 

Congenital Heart Defects

Congenital Heart Public Health Consortium:  Lifelong Care

This document contains links to resources related to transition and lifelong care of patients with Congenital Heart Defects. 

Cystic Fibrosis and Other Pulmonary Diseases

Video: Transition Services Overview and Cystic Fibrosis:  Through My Eyes

 In this video of a talk given at UW Health's Cystic Fibrosis (CF) Family Education Day in 2014, a young adult speaks about his experiences with CF. 

Moving On…Transitioning from the Pediatric to the Adult Care Team (PDF) (Cystic Fibrosis

Information from UW Madison's Pediatric Pulmonary Center.

Moving On…Transitioning from the Pediatric to the Adult Care Team (PDF) - (Pulmonary Disease)

Information from UW Madison's Pediatric Pulmonary Center.

 Getting Ready for College

One young woman's story about attending college with CF, as well as detailed advice for preparing for a successful college experience when you have CF.

Diabetes

College Diabetes Network

The College Diabetes Network (CDN) is a 501c3 non-profit organization, whose mission is to empower and improve the lives of students living with Type 1 diabetes through peer support and access to information and resources.

NDEP Transitions: National Diabetes Education Program

Keys to Independence:  Diabetes (From Pediatric Pulmonary Center, UW Madison)

Type 1 Diabetes in College (from the Juvenile Diabetes Research Foundation)

Diabetes:  Marco's Story  A video about a young man who is heading off to college with Type 1 diabetes.  Marco shares his successes and challenges related to managing his condition more independently.

Down Syndrome

Children with Down Syndrome:  Information for Families (From Healthychildren.org and the American Academy of Pediatrics.  Note:  there is a specific section on youth ages 13-21).

DS-Connect:  The Down Symdrome Registry

This site has news and information about Down Syndrome research.  A registry allows individuals with Down Syndrome to learn about research studies seeking volunteers.

 

Epilepsy/seizure disorders

Girls With Nerve:  Sexual and Reproductive Health Information for Teens With Epilepsy

A site for teens with epilepsy/seizure disorders to access sexual and reproductive health information.

You Are Not Alone Parent Toolkit

A support program for parents of teens who have epilepsy.  Online resources.

Inflammatory Bowel Disease

IBD U (IBD University)

IBD U is a resource portal with tips and info to help you as you transition from pediatric care to adult care, for teens with ulcerative colitis or Crohn's Disease.

Just Like Me IBD

This site contains information for teens with IBD (Crohn's and Ulcerative Colitis). 

Lupus

15 Questions:  Transitioning from Pediatric to Adult Care

Information on transition from the Lupus Foundation of America.

Marfan Syndrome

Marfan Foundation Teen Space

Teen-friendly area of the Marfan Foundation's website.

Need-to-Know Information for the Teacher

Comprehensive information on Marfan Syndrome that can be shared with teachers and other school personnel by teens and their families.

Teens and Marfan Syndrome

Information, including a "teen resource" with some specific information on transition that can be downloaded, from the Marfan  Foundation.

 

Metabolic Conditions

PKU Toolkit (toolkit of resources for teens and yong adults with PKU)

Children's Hospital of Boston Transition Toolkit (information for teens and young adults with metabolic conditions)

 Moving Forward:  Your Guide to Galactosemia and Primary Ovarian Insufficiency  From Children's Hospital, Boston--for young women and their families.

 

Neuromuscular Diseases

Rocking and Rolling to Independence (PDF) - (Neuromuscular Disease)

 

Reproductive Health

Reproductive Health in Teens with Chronic Conditions

Information from the American Academy of Pediatrics via HealthyChildren.org

Spina Bifida

Living With Spina Bifida:  Young Adults

Spina Bifida:  Health Info Sheets for Adults

These info sheets from the Spina Bifida Association can help young adults to understand emerging challenges and ways to manage their health as they transition to adulthood and to adult health care.

SBPreparations

This site can be a resource for young adults with spina bifida, as well as for family members, to help guide transition.

 

Apps

Apps on smartphones or tablets may help youth and young adults to more independently manage their health care needs.  While we cannot offer any specific app recommendations, here are some general ideas for key word searches: health, health transition, teen health, health maintenance, or medications.

Search the Apple App Store

Search for Android Apps

 

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