The DAC consists of the project staff at the Office for Rare Conditions in Glasgow and external members who serve on the Committee for 3 years (plus 1 optional). All members other than those marked with an asterisk are active users of the Registry as reporting centres or investigators. If you are interested in becoming a member of the Committee, please get in touch.
| Member | Role | Affiliation | Term |
| Jeremy Tomlinson | Chair | Oxford | 2027 |
| Anna Nordenström | SC Chair | Stockholm | 2026 |
| Faisal Ahmed | Project Lead | Glasgow | NA |
| Giorgio Dal Maso* | Patient Representative | Vincenza | 2027 |
| Nicola Greenlaw* | Ethics Advisor | Glasgow | NA |
| Mariska Schröder | Early Career Researcher | Utrecht | 2026 |
| Tulay Guran | Ordinary Member | Istanbul | 2028 |
| Agustini Utari | Ordinary Member | Semarang | 2027 |
| Rodolfo Rey | Ordinary Member | Buenos Aires | 2028 |
| Berber van der Weijde* | Patient Representative | Leeuwarden | 2027 |
| Malika Alimussina | Project Scientist | Glasgow | NA |
Last revised