About KAISZ

After 7 years of medical tests, my son was diagnosed with an autoinflammatory disorder. Needless to say, the impact of these disorders on the daily life of my son is challenging. On top of that, there are the endless number of treatments, the frequent visits to different healthcare professionals, and the added hardship of your child having to live a different life than your average teenager, with not the same quality of life.

I especially enjoy (and think this is one of my best qualities) involving patients, caregivers and the public in research, awareness and sharing information with them about autoinflammatory diseases, as this of course greatly benefits the patient and his or her treatment.

I am in charge of the daily running of several online patient communities such as the AutoinflammatoryAlliance, for which I am the European representative. I am also the Vice President at ENCA .

You can find me at various congresses, such as ISSAID, PReS, EULAR, ECRD2020 and Patient Engagement Open Forum.

The ultimate goal is a good quality of life for patients with autoinflammatory diseases. Our aims are shorter diagnosis times, that it will be easier to find specialised experts worldwide, that treatment is accessible to all, and that studies on the effectiveness of medication become available faster.

Both of my teenage daughters, as well as I and several relatives on my mother’s side, have been diagnosed with an NLRC4 abnormality called FCAS4. Fortunately, this is a relatively mild autoinflammatory disorder, as long as it is kept under control with medication.

Several years ago, I learned of the existence of KAISZ through our pediatrician. Not long after I became a member, the association was in need of additional board members. I’m a person who always gets very happy when I can contribute and help out. Whether that’s at the school of the girls, at the brass band I play in or, in this case, within our patient organisation. That’s why I applied as an aspirant board member and I look forward to leading the KAISZ Foundation in the new structure, together with Saskya.

The availability of information and short lines of contact with our specialist doctors is of great importance to me and something that I want to continue to work for within the KAISZ foundation.