Ultra Orphan Assessment

The Scottish Medicines Consortium (SMC) has completed its initial assessment of the evidence for the above product using the ultra-orphan framework.

Indication under review: Treatment of activated phosphoinositide 3-kinase delta (PI3K-delta) syndrome (APDS) in adult and paediatric patients 12 years of age and older.

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Scottish Government Medicines Policy Branch will notify Health Boards when this medicine is available for prescribing within the ultra-orphan pathway. Meantime any requests to access treatment should be considered through local non-formulary processes.

Medicine details

Medicine name:
leniolisib (Joenja)
SMC ID:
SMC2836
Indication:

Treatment of activated phosphoinositide 3-kinase delta (P13Kδ) syndrome (APDS) in adult and paediatric patients 12 years of age and older.

Pharmaceutical company
Pharming Group NV
BNF chapter
Nutrition and blood
Submission type
Ultra-orphan initial assessment
Date Published
08 December 2025