Position: Allan-Herndon-Dudley Patient Advocate
Organisation: Veronica Popa
Area of work: Ethical Legal Social Issues
Member of: Ethical Legal Social Issues
Role in RD-Connect:
Veronica is a member of the RD-Connect Patient Advisory Council (PAC).
Veronica Pop is the mother of a child with Allan-Herndon-Dudley syndrome and a passionate advocate for her son’s condition. She is reaching out to both patient and scientific communities in order to create the first AHDS patient registry and the first patient organization in order to boost research in this field.