Hülya joined Pompe Support Network as a board member in 2020, and was an active board member until stepping down January 2024 to take on the CEO role. She is a member of the LSD Collaborative and a board member of the International Pompe Association.
Hülya has a partner who has Pompe and first learned about the condition from him. She has followed research and become more involved in the community over the past decade and a half.
As CEO she works closely with Trustees and members of the community to ensure PSN is able to share advice and offer support throughout the Pompe community.