| Member | Affiliation | Place |
| Faisal Ahmed | Project Lead, Office for Rare Condition | Glasgow, UK |
| S Ching Chen | Senior Fellow, Office for Rare Condition | Glasgow, UK |
| Asma Deeb | ASPED | Abu Dhabi, UAE |
| Annalisa Deodati | ESPE | Rome, Italy |
| Yazid Jalaludin | APPES | Kuala Lumpur, Malaysia |
| Julia von Schnurbein | ESPE | Ulm, Germany |
| John Waller | Novo Nordisk | |
| TBA | Data Scientist | |
| TBA | Patient Representative |
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