Programs and Information

for Youth and Young Adults Living with OI



YEP Committee

OI Youth Forum Facilitators at the 2014 OIF National Conference

Loving Letters- A Project of the OI Women's Forum 
In the spring of 2014, a group of women living with osteogenesis imperfecta were asked to write a letter to their 16 year-old self.  The response was enormous.  This link is a collection of those letters along with some biographical information on the women who wrote them. 

Transitioning from Pediatric to Adult Care

Youth and young adult years are a critical time of transition. This is especially true for young people with OI. Although formal "Transition Programs," are available for teens in many cities, this article points out how the process really starts before the teen years.

What are transition programs and why are they important?
Young adults with OI who have received all or most of their health care through a children's hospital are faced with many challenges when they no longer qualify for care through a pediatric facility. In recent years, the Shriners Hospitals and other children's hospitals that see children with life long medical conditions have begun offering programs to prepare young people and their families to make this transition.

What should you look for in a Transition to Adult Healthcare Program?
First, the program should be designed to help young people take responsibility for their own health care. This involves becoming knowledgeable about OI, being able to communicate confidently with physicians and being capable of making care decisions. Second, the program should provide tools to identify adult care resources before loosing eligibility for care in the pediatric facility. This involves finding OI specialists, primary care physicians, and working within insurance limits.  Click here to read the complete article>>

More information and resources- A. I. DuPont Hospital for Children Transition Program
A pediatric transition team from Nemours Alfred I. duPont Hospital for Children in Delaware recently produced a series of videos titled “Becoming an Adult” for youth and young adults with special health care needs and their families.  The video series covers topics such as self-advocacy, independent living, vocational rehabilitation, and other community-based resources related to transitioning health care needs.  The videos are closed captioned, and can be viewed online and on the YouTube web/mobile phone application.  Click on the links below to view the videos.

What Will I Do After High School

Legal and Financial Planning

Taking More Responsibility for My Health Care

Where Will I Live After High School


Colleges & Careers
Read the transcript of our College and Careers Webcast... a peer-to-peer discussion of the challenges and rewards young adults with OI face as they enter the college environment.






Volunteer Opportunities
If you are interested in doing an awareness or fundraising event in your community, please contact the OI Foundation at (301) 947-0083.

Young Adults Support and Resource Contacts

Young Adults with OI Facebook Page



Email for questions about the OI Foundation's Youth Leadership Council or for more information about programming for youth and young adults living with OI.


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