1 October 2022: CureCN Came Together for Annual Meeting (Bilthoven, NL)
For early October, DNF organised an annual meeting to which the Dutch CN families were cordially invited. Dutch doctors were also present, among them Dr Sinaasappel, one of the first doctors who worked on Crigler-Najjar in the Netherlands.
Piter Bosma as well as Marylène and Philippe Beinat from AFCN were asked to speak at the event. Piter Bosma gave an update on the trial, while AFCN spoke about the organisation of CureCN, the different partners, the role of the three patient associations in CureCN and what will happen from now till the end of the trial and after.
This meeting offered AFCN the opportunity to meet and exchange ideas and information with the CN patients and their families and with Dutch doctors. It also gave the members of the two boards the occasion to get to know each other better and share a lot of information. The families were very engaged and asked a lot of questions.
We thank the partners, doctors and CN families for their attendance and lively discussions.