Programs and Information
for Youth and Young Adults Living with OI
OI Youth Forum Facilitators at the 2014 OIF National Conference
Free Webinar Series on Transitioning Medical Care
The New York - Mid-Atlantic Consortium for Genetic and Newborn Screening Services (NYMAC) is hosting a webinar series titled "The Transition of Patients with Special Health Care Needs to Adult Medical Care." The presenters will be sharing information for anyone interested in learning more about transitioning from parental-care to self-care and from pediatric to adult medical services. The series will meet seven times. Individuals and families are encouraged to attend to better understand their role in medical transition care. Learn more and register at https://attendee.gotowebinar.com/regist…/1412553946587002114. If you have any questions, please contact NYMAC at (518) 474-7148 or firstname.lastname@example.org.
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