Over the past few months, our CEO Louise has continued to work with interested specialists from Queensland Children’s Hospital about the establishment of a NF Multi-disciplinary clinic. We recently welcomed eight specialists from the hospital to our recent NF Symposium, all keen to update themselves on recent international and local studies on NF. This also gave them an opportunity to network with our international keynote speaker, Prof. Michael Fisher, as well as other NF specialists from our existing clinics at Westmead and Royal Melbourne Children’s Hospital.
As previously reported they have established a specialist committee and we are collectively working on co-funding a “Connective Nurse” who specialises in NF and reports to both QLD Health and the CTF, in a similar way to the work that Sally (CHW), Kylie (RCH) and Natalie do for us. This nurse will help build up knowledge on NF and relevant links with NF specialists state-wide, as well as other contacts and/referrals in private practice. His/Her first task is likely to be documenting the number of Queensland NF patients and also assisting to identify and enrol suitable qualified children for the upcoming MEK TiNT trial.
Please note: Understandably, the recent COVID-19 pandemic has put extreme pressure on both Qld Health, as well as these individual specialists, many of whom are now on standby for COVID-19 frontline duties. So as keen as we are to still make this happen, it is likely that there will be no further progress until we the virus is under control and the emergency phase lifted.
We will continue to keep you updated on any changes.