Meet Our Patient Representatives: Mariët Faasse

As part of Cleft and Craniofacial Awareness and Prevention Month, we are shining a spotlight on our patient representatives. Today we would like to introduce Mariët Faasse.

My name is Mariët Faasse, and within ERN CRANIO I represent LAPOSA, the Dutch National Patient and Parent Association for rare congenital craniofacial conditions. Our community includes people with conditions such as (no

n-)syndromic craniosynostosis, craniofacial microsomia, and Treacher Collins syndrome. Through peer support, information, advocacy, and awareness raising, we support families and ensure their voices are heard.

I was born with unicoronal craniosynostosis and underwent multiple surgeries for both the craniosynostosis and related strabismus. Driven by these personal experiences, my background in healthcare and research, and the collective experiences of our members, I work to connect patients, families, clinicians, and researchers to improve research and quality of care. I also conduct patient-driven research within ERN CRANIO, focusing on topics that matter most to patients and families.

For me, patient representation means translating the experiences of a diverse community into meaningful contributions to research and clinical practice. This often involves bridging the worlds of patients and families, researchers, and healthcare professionals, fields that can differ substantially in their language, evidence, priorities, and everyday realities. That challenge, and the opportunity to connect these perspectives, is what I find most rewarding.

During Cleft and Craniofacial Awareness and Prevention Month, I want to highlight the importance of patient organisations. They provide connection, support, information, and understanding, while reminding families that they are not alone. Our members often refer to us as their ‘second family’, which emphasises the difference a patient organisation can make in people’s lives. To us as patient representatives, every shared experience matters and serves as a vital knowledge source to better care, better research, and a better future for everyone affected by a craniofacial condition. Feel free to follow our Instagram page @laposa.patientenvereniging or get in touch! 

Learn more about laposa: click here