Speaker Information
Meet the speaker and learn more about their expertise, experience, and contribution to advancing innovation in paediatric medicines and clinical research.
Ellen Koekoeckx
Patient Advocate & Global Advisor,
Foundation for Angelman Syndrome Therapeutics (FAST)
Ellen Koekoeckx is a patient advocate and Global Advisor to the Foundation for Angelman Syndrome Therapeutics (FAST). Drawing on more than ten years of experience in the pharmaceutical industry and her lived experience as the mother of a daughter living with Angelman syndrome, Ellen brings a unique perspective to patient advocacy and therapeutic development.
She works closely with patient organizations, researchers, clinicians, industry partners, and regulators around the world to advance Angelman syndrome research, support therapy development, and ensure that the perspectives of individuals and families affected by Angelman syndrome are represented throughout the development process.
Ellen serves on the Executive Board of the European Genomic Medicine Consortium and is an ePAG representative within ERN ITHACA. Her work focuses on ensuring that the patient voice is meaningfully integrated into research, drug development, regulatory decision-making, and healthcare policy, helping to bridge the gap between scientific innovation and the needs of patients and families.