In loving memory of Jose Drabwell, a remarkable leader and cherished friend
It is with profound sadness and heavy hearts that the IPOPI family bids farewell to one of its most beloved and dedicated members, Jose Drabwell, Past-President and Board Member of IPOPI. Jose’s passing leaves a void that cannot be filled, but her spirit, passion, and legacy will forever inspire us.
Jose’s journey with IPOPI began in 2004, when she first joined the Board. From 2008 to 2018, she served as President of IPOPI, a period marked by remarkable growth, progress, and global outreach for the organisation. After stepping down from her Presidency, Jose remained a steadfast member of the Board until October 2024, continuing her contribution to shaping the future of IPOPI and supporting the global primary immunodeficiency (PID) patient community with unwavering commitment.
Jose’s dedication to the global PID community was exemplified through initiatives such as the Bob LeBien Asian Development Programme, where she championed the establishment of numerous national member organisations across Asia, amplifying awareness and support for PIDs in the region. Her efforts bridged continents, bringing the global PID community closer together.
In a life defined by resilience, Jose was first diagnosed with Common Variable Immunodeficiency (CVID) in 1993. This diagnosis was the catalyst for decades of tireless advocacy, as she vowed to ensure that no other patient would have to endure the same difficult diagnostic journey that she had faced. Jose’s dedication to improving the lives of those living with PID transcended the ordinary—she was not only an advocate, but a role model for so many of us and countless patients around the world. Central to her work was an unshakable belief that all patients, no matter where they live, should have the right to be diagnosed as early as possible and access life-saving or curative treatments.
Her remarkable efforts were recognized on numerous occasions. In April 2018, Jose received the prestigious royal medal of Officer of the Order of Orange-Nassau in the Netherlands, her birthplace. The award, presented by the Mayor of Rotterdam, Ahmed Aboutaleb, during a World Primary Immunodeficiencies Week celebration, highlighted her outstanding contributions to the PID community.
Beyond her inspiring leadership, Jose was a truly remarkable person—kind, compassionate, and generous. Her infectious enthusiasm and boundless energy made her an irreplaceable part of the IPOPI family. Her passion for improving the lives of PID patients was contagious and greatly contributed to enhancing collaboration across our global stakeholders community.
Her impact was not confined to her work with IPOPI alone. She served as one of the longest-serving patient advocates on the European Medicines Agency (EMA)’s Patients and Consumers Working Party (PCWP) from 2005 onwards. Her involvement in various EMA activities, including the European Network of Paediatric Research at the EMA (Enpr-EMA) and the Emergency Task Force, cemented her as a trusted voice in the broader healthcare community.
Jose lived life with incredible purpose. Her dedication to advancing the cause of PID patients, coupled with her genuine care for others, made her an extraordinary leader and a dear friend. Her vision was that of a world where no PID patient was left behind and had access to the care and treatment they deserved.
Though Jose is no longer with us, her legacy will remain a guiding light for all of us at IPOPI. Her exceptional dedication will continue to inspire us and influence our efforts for many years to come. As we reflect on her contributions, we are reminded of her enduring commitment to improving the lives of those living with immunodeficiencies.
The IPOPI family, along with its national member organisations, will always be grateful for her tireless devotion to our cause. We will continue to honour her by carrying her passion forward in all that we do.
Rest in peace, Jose. Your legacy is forever etched in our hearts, and your spirit will continue to guide us in our shared journey towards a brighter future for PID patients around the world.
