‘Peter, can you help me? Clementine says you know a lot of people?’ I think this is probably the first thing I heard from a pleasantly demanding Fabrizia when I met her and Clementine, together with Ilona at the Pasteur Institute. It was in a setting where we met with one of the leading patient advocates from ACTUP Paris. ACTUP is our role model for advocacy for patients. Fabrizia fits totally in that role. Fabrizia is our Italian French patient advocate and scholar activist. She passed away this weekend suffering from a sarcoma.
Fabrizia was determined to help other patients. She knew the importance of sharing knowledge and data and made us aware that we do not share our data in a way that patients can contribute via research and better treatments.
“One of my main focuses right now is how patients can share their genomic data with researchers under the current GPDR regulation.”
When we met, whether it was in Paris or at our Annual Congress in Amsterdam, she was always thinking how to help researchers to get better data. Always looking for possibilities to get the data available and where the hurdles are that needed to be taken away. It was so intensely beautiful, a couple of months ago, to bring her together with a group of people to get her genomic data available in the cloud for everybody. ‘Real name’ and public, as a statement that patients are always willing to help other patients.
The passion of Fabrizia is unparalleled and so wonderful to experience. When talking to her you felt the need to act. You simply couldn’t refuse to assist. It would be offending to her and yourself when you stayed inactive. At Inspire2Live we all know that doing nothing is no option.
“Inaction Kills”
Being with Fabrizia is a gift and makes you modest. She makes you feel that you can make a difference. In the last sessions of our World Campus, where she met with many people of our organization, she let her light shine and empowered us. With a boundless energy she showed us how to live and act.
Life is a gift and that gift has now been taken away from her. With Fabrizia in our hearts we hope that her loved ones will find the strength and love to live further. We patient advocates and scholar activists will go on with Fabrizia in our hearts and through a lot of tears, with a smile on our face, for her. We will accomplish her mission.
On behalf of the Patient Advocates and Scholar Activists of Inspire2Live,
Peter Kapitein
About Fabrizia: She was an Italian cell biologist working in France and diagnosed with a rare cancer in 2013. She worked on several projects like disseminating information and connecting patients across Europe via the Eurordis multilingual platform (link) and teaming up with a fellow patient to kickstart a research project for a liposarcoma vaccine (link). One her main focuses was how patients can share their genomic data with researchers under the current GPDR regulation (link).
