Somewhere to Go

While many families with children living with OI are able to receive specialized pediatric care, an overwhelming number of adults with OI face difficulty finding knowledgeable primary care and suitable specialty support. Through the OI Foundation’s Somewhere to Go initiative, patients, caregivers, clinicians and health researchers have come together to address the issue of transition of care and access to adult care.

The objectives behind these patient-centered meetings are to:

• Bring together a multi-stakeholder, multidisciplinary interested group for a working meeting on the topic of adult patients with rare, childhood-onset diseases who find themselves with “nowhere to go” for care.
• Conduct a working meeting about adult persons with childhood-onset rare-diseases transitioning from pediatric to adult care to catalogue and describe the current gaps, barriers, and challenges they face, and the potential causes behind them.
• Think strategically about solutions to address these gaps, barriers, and challenges.
• Prioritize which issues or solutions could be addressed collaboratively over the next 2-3 years.

The OI Foundation has held three in-person meetings in a continuing series centered around improvement to transition care, entitled “Somewhere to Go.” The first patient-centered meeting, held in October of 2023, brought together a multistakeholder, multidisciplinary interested group to identify gaps in transition care faced by adults with childhood-onset rare diseases and to think strategically about solutions to address those gaps, barriers, and challenges. The objectives of the second STG meeting, held in January 2025, included motivating the rare bone disease community members and other key stakeholders to develop care standards and quality measures for pediatric-to-adult care transitions for patients with rare bone diseases. In March 2026, The OIF, in collaboration with the Rare Bone Disease Alliance (RBDA), brought together a group of patient advocacy leaders, patients, caregivers, clinicians and experts to develop guidelines to help individuals transition from pediatric to adult care.

 PUBLICATION: Somewhere To Go: a position paper on addressing gaps in transition care for adults with childhood-onset rare diseases
This position paper provides an overview of the key topics discussed and summarizes the 21 prioritized, actionable recommendations produced. Learn more at https://pubmed.ncbi.nlm.nih.gov/41039450/

New Guideline: Transition from Pediatric to Adult Care for Childhood-Onset Rare Bone Diseases

The Osteogenesis Imperfecta Foundation (OIF), in collaboration with the Rare Bone Disease Alliance (RBDA), is pleased to share the Guideline for the Transition from Pediatric to Adult Care for Individuals with Childhood-Onset Rare Bone Diseases. Developed through a collaborative, evidence-informed process involving patients, caregivers, clinicians, researchers, and advocacy organizations, this guideline provides practical recommendations to help improve the transition from pediatric to adult care. Built on the Got Transition® Six Core Elements and adapted to address the unique needs of people living with rare bone diseases, it is intended to serve as a foundation that individual rare bone disease organizations can further tailor for their communities. We hope this resource supports patients, families, healthcare providers, and advocacy organizations in creating more coordinated, patient-centered transitions and improving lifelong care.

Somewhere To Go Guidelines

Appendices

Questions, comments, or feedback on the guideline are welcome at bonelink@oif.org.