Two years ago we had the kick-off of Partitura 1, a side project of the SYMPHONY consortium. The aim was to create a care pathway and patient journey for children aged 0-8 with bleeding disorders.

On June 9th, our Partitura symposium marked the end of this two year journey. Attended by representatives from different hemophilia treatment centers, NVHP patient association members, and collaborative students, it was a day filled with inspiration and valuable insights.

The symposium began with two captivating presentations. Corinne Liem, nurse specialist in the Radboud UMC Nijmegen, shared her experiences with the care pathway co-creation process in a ‘kids menu’. Caroline van der Velden, nurse specialist in the Erasmus MC, talked about growing up with hemophilia and the importance of transition. These insightful talks were complemented by a special interview with a patient who shared his experiences as a young child with hemophilia and infused the event with a musical touch.

After a coffee break, we delved into workshops, where attendees actively participated. Phones in hand, we used Mentimeter to discuss practical insights of care pathways, explore recreated consultation scenarios, and practice with patient journey blueprints.

To end the day, we gathered for drinks and bites, cherishing the opportunity to connect and reflect. We have received a wealth of useful input from all the attendees, enriching our collective knowledge and inspiring future endeavors.


By Caroline Mussert (PhD WP06)