In October 2023, the OI Foundation hosted a conference titled, Somewhere to Go for Adults with Childhood-Onset Rare Diseases: A Conversation About How We Can Fill Gaps in Care, to bring together various stakeholders to explore the transition of care and gaps in adult care within the childhood-onset rare disease communities. Through collaboration among the patients, caregivers, clinicians, and health researchers in a wide variety of fields, we aimed to identify common themes that transcend the specifics of individual rare diseases, recognizing it is not feasible or practical to have separate strategies for each disease. These foundational elements are essential to the longer-term tasks of devising solutions, establishing the metrics necessary to evaluate their actual performance, and understanding the conditions and incentives that facilitate the adoption of adult care models that perform well for adult patients with childhood-onset rare diseases.
Click here to view the summary document of that two-day working meeting which presents the findings, work products, and recommendations that resulted.
