Jose Drabwell has been a patient advocate since late 1990s after she was diagnosed with CVID. In 2004 joined the IPOPI board as treasurer, vice chair and in 2008 was elected as president. She retired from this position in 2018 and is on the board of Directors of IPOPI. Represents IPOPI at the EMA in various working groups, task force and networks. In 2018 was honoured for her global work in raising awareness about Primary Immunodeficiencies when she became an Officer in the Orde van Oranje-Nassau. She continues to ensure that the voice of a patient with a Primary Immunodefiency is heard and listened to.