LAPOSA

I was born with unicoronal synostosis in 1995 and had my first surgery (cranial vault remodelling) when I was 16 months old. After that, multiple eye (strabismus) surgeries followed. Now, I only still have some minor eye issues (prolonged reading, depth perception) but I’m more a less used to it and know how to handle with it. Due to my hospital experiences I became interested in healthcare. In daily life I work as a Nurse Anaesthetist and recently completed a Masters in Clinical Health Sciences at Utrecht University.
Besides my fulltime job I’m a Board Member of LAPOSA since 2020 as I wanted to support and advocate those living with craniosynostosis and another craniofacial conditions. LAPOSA is the Dutch Patient and Parent organization for congenital craniofacial conditions. Among the general support activities and gatherings we organise for patients and their families several times a year, we as an organisation feel that collaboration with clinicians and centres of expertise is important to improve the care and thereby the outcome for children and adults. Another aspect important to us is disease-specific information which is easily accessible to patients. For that reason, we published the Dutch patient version of the guideline on craniosynostosis this year.
Since September 2022 I am the ePAG advocate on behalf of LAPOSA within ERN CRANIO. I’m involved in the working group for craniosynostosis & other craniofacial anomalies and the patient representative in the Scientific Committee that is responsible for data access of the patient registry and policies among multicentre research. I feel that we (can) make a significant difference for patients in Europe when sharing expertise, knowledge, information and collaborating in research as both patient(s) representatives and clinicians/researchers. Our first contribution to the network is the patient version of the guideline on craniosynostosis which now has been published in English by ERN CRANIO and will soon be translated to other languages in Europe. Although the severity and type of conditions varies widely within ERN CRANIO so will the personal, individual experiences, I challenge myself to represent the wider community of patients and adults by picking up experiences from members within our patient organisation.
Links:
- LAPOSA: www.laposa.nl
- LinkedIn profile: www.linkedin.com/in/mariët-faasse