700 Section - Towards a Future Model: Feasibility of Collaborative Rehabilitation in Rare Diseases

Over 300 million people worldwide live with a rare disease, representing a patient population that rehabilitation professionals are increasingly likely to encounter. However, health care providers often lack knowledge about these conditions and may feel uncertain about appropriate treatment. Therefore, patients frequently report the absence of trusted professionals with expertise in their diagnosis. These challenges may compromise effective rehabilitation. To address this, we tested the feasibility of a collaborative rehabilitation programme where experts for rare diseases collaborated with rehabilitation specialists to meet the needs of both patients and providers through shared expertise and coordinated care.

Design:

Experts on a group of rare diseases collaborated with rehabilitation specialists to adapt an existing group rehabilitation programme to meet the needs of patients with those rare conditions. The disease-specific experts coached the rehabilitation staff and remained available to provide guidance on diagnosis-related challenges throughout the rehabilitation process. In addition to standard lectures, diagnosis-specific sessions were delivered by the experts to the patients. This abstract presents qualitative data on how professionals experienced the collaboration.

Results:

This approach was feasible and acceptable. Rehabilitation specialists felt more confident with expert support. The project helped demystify and reduce the perceived challenges of working with patients with rare diseases. The resources utilized were considered feasible by all groups. Experts also emphasized the value of encountering their patients outside their usual clinical settings. Both groups expressed interest in gaining a deeper understanding of each other’s approaches to patient education in future collaborative efforts. 

Conclusion:

Collaborative rehabilitation between experts on rare diseases and rehabilitation specialists offers a promising model to meet the needs and challenges of both professionals and patients with rare diseases. It fosters mutual learning, increases confidence in health care workers, and enhances care quality.