We were so pleased to be invited to speak today at the 50th British Paediatric Neurology Association Annual Conference in Bristol.
PANS PANDAS UK chairperson, Vicky Burford took to the stage in the main auditorium alongside Professor Ming Lim, Dr Ashley Liew, Dr Nadine Iman Schottler and Dr Michael Eyres.
This research workshop on PANS and PANDAS was chosen as one of only four workshops delivered throughout the three-day conference. In front of an audience of well over 150 paediatric neurologists from across the UK, the speakers gave an overview of the conditions, the work currently underway with the PANS PANDAS Steering Group, and what UK research trials for treatment of PANS and PANDAS might take place in future.
Vicky Burford spoke of the growing numbers of children, young people and adults living with PANS and PANDAS, the huge challenges they face and the damage done by the 2021 publication of the BPNA Consensus Statement on PANS and PANDAS. This was followed by a progress report on the PANS PANDAS surveillance study application, and details on the formation of the consensus guidelines development group and the education working group.
The workshop was incredibly well received and Vicky said "I was delighted to see such interest in PANS and PANDAS and the work being carried out to end the current variation in care. For me, today really showed how much progress has been made in the past few years. Whilst change cannot happen quickly enough for our community, it is clear now that professionals are increasingly aware of the conditions and are willing to contribute meaningfully towards improved standards of care."