With the support of our local Patient and Public Involvement and Engagement group, international patients and families, and academic colleagues from the UK, continental Europe and North America, the meeting included fully integrated patient and parent led discussions on research and care priorities, classical scientific sessions, and working groups in which clinicians, scientists, patients, parents and charities discussed a forward strategy.
Over the two days we discussed the molecular pathophysiology of CNO, treatment decisions, research priorities and support, and addressed the need for improved patient and parent involvement in research and care decisions.
The conference was a great sucess, with both patients and families and academic colleagues joining us in-person and live as part of our first hybrid conference.
For those who were unable to attend, we will be making some of the sessions available to watch here, due to IP issues there has been a delay, however, they will be uploaded by the end of September 2022, so watch this space..
View full the programme using this link.