Asynchronous digital advisory board for ultra-rare lysosomal storage disorder: platform-based KOL collaboration
Ultra-rare disease expertise is globally scattered — and live meetings are not always possible
For ultra-rare lysosomal storage disorders, the world's leading clinicians are not concentrated in one country or one institution. Fewer than 20 specialist physicians globally had meaningful clinical experience with this specific condition,.
The brand needed to convene these experts to align on patient identification criteria, treatment initiation thresholds, and monitoring protocols. A conventional advisory board — two days in a European city — was not practical. Scheduling conflicts, travel obligations, and the sheer geographical distribution of the group made simultaneous attendance impossible.
At the same time, the scientific questions were too complex for a simple online survey. The client needed genuine expert dialogue, structured around specific clinical scenarios — and needed it documented in a format that could be used in future guideline submissions.
Rare disease expertise does not cluster in convenient time zones. The format had to come to the experts — not the other way around.
What we did
Measurable impact
The advisory board ran over 21 days, with 14 out of 14 invited experts contributing substantively to all 5 discussion modules. Consensus was reached on patient identification criteria and treatment initiation thresholds. The consensus document was subsequently submitted as a short communication to a specialist journal. Total cost was approximately 40% lower than a comparable live advisory board format, and participant feedback was positive overall.
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From the field:
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