Looking back at Perspectives on PANS
Three days. Three conferences.
One huge impact!
We are still buzzing with energy and inspiration after wrapping up Perspectives on PANS; our landmark, three-day conference held in October 2026 at the beautiful Ashorne Hill in Warwickshire!
Created to advance understanding, research, clinical practice, and family support, this historic event was nothing short of extraordinary. For a small charity working towards big change, seeing our vision come to life with such overwhelming support has been deeply moving.
To everyone who attended, supported, or helped shape Perspectives on PANS: thank you. This conference is just the beginning, and we cannot wait to see how the connections made continue to ripple outward, driving lasting change for years to come.
Our conference highlights
Our conference highlights
As we look forward to bringing you the recordings from the event, we wanted to share with you our highlights from across the three specialised days, and why this event marks such a powerful turning point for everyone affected by PANS and PANDAS:
As we look forward to bringing you the recordings from the event, we wanted to share with you our highlights from across the three specialised days, and why this event marks such a powerful turning point for everyone affected by PANS and PANDAS:
Our Research Symposium
Kicking off the event, our Research Symposium brought researchers and academics together to explore the current PANS and PANDAS research landscape. Highlights included vital sessions on lived experience insights, alongside valuable overviews of current UK research, the James Lind Alliance research priorities, and potential future studies.
It was a privilege to showcase seven Steven Malcherczyk Rising Researchers at this event; these early career researchers were celebrated for the work they are doing relating to PANS and PANDAS. You can find out more about the Rising Researchers, see their poster presentations and read their abstracts here
Our afternoon workshops brought together laboratory, clinical and mental health research experts to facilitate the sharing of current research projects, and consider future research ideas. Here are the top five ideas for future collaborative projects were put forward by our Research Symposium attendees:
- Collaborative data sharing
- Measurement and monitoring tool
- Understanding biomarkers
- Treatment trials
- Improving family and carer support
“PANS PANDAS UK’s Perspectives on PANS Conference was where we put differences aside to find common ground to help tackle this condition.”
– Professor Ming LimOur Clinical Professionals Conference
“Sir Jim’s message was a powerful reminder that progress happens when patient voices, scientific expertise and healthcare leadership come together around a shared commitment to improving outcomes for children and young people.” – Vicky Burford, our CEO
Our Clinical Professionals Conference welcomed healthcare professionals from across paediatrics, primary care, mental health and allied health services for a CPD-accredited day focused exploring understanding and management of PANS and PANDAS.
The day began with this powerful message of support from Sir Jim Mackey, Chief Executive Officer of NHS England.
For conditions that many families have struggled for years to have recognised and understood, support from the most senior figure in the NHS represents an important milestone. It demonstrates that the need for better awareness, better evidence and better support for affected children and families is being recognised at the highest levels of our healthcare system.
Our Clinical Professionals Conference welcomed healthcare professionals from across paediatrics, primary care, mental health and allied health services for a CPD-accredited day focused exploring understanding and management of PANS and PANDAS.
The day began with this powerful message of support from Sir Jim Mackey, Chief Executive Officer of NHS England.
For conditions that many families have struggled for years to have recognised and understood, support from the most senior figure in the NHS represents an important milestone. It demonstrates that the need for better awareness, better evidence and better support for affected children and families is being recognised at the highest levels of our healthcare system.
“Sir Jim’s message was a powerful reminder that progress happens when patient voices, scientific expertise and healthcare leadership come together around a shared commitment to improving outcomes for children and young people.” – Vicky Burford, our CEO
This was followed by community members, including our charity ambassador Jo Joyner, sharing their valuable lived experience and the messages they most wanted doctors to hear. The rest of the day comprised learning sessions exploring themes of assessment and diagnosis, case management, monitoring and reviewing patients, and supporting families affected by the conditions.
These valuable sessions were led by esteemed international experts including Professor Russell Dale (University of Sydney), Professor Jennifer Frankovich (Stanford University), and Dr Susan Swedo (PANDAS Physicians Network / NIH), alongside leading UK specialists like Professor Rajat Gupta, Dr Ashley Liew, Professor Ming Lim, Dr Jennifer Heseltine, Dr Tim Ubhi, Dr Vicky Queralt, and Lucy McDonald. The day concluded with a collaborative live Q&A session; a unique opportunity to address clinical queries with practical solutions.
This was followed by community members, including our charity ambassador Jo Joyner, sharing their valuable lived experience and the messages they most wanted doctors to hear. The rest of the day comprised learning sessions exploring themes of assessment and diagnosis, case management, monitoring and reviewing patients, and supporting families affected by the conditions.
These valuable sessions were led by esteemed international experts including Professor Russell Dale (University of Sydney), Professor Jennifer Frankovich (Stanford University), and Dr Susan Swedo (PANDAS Physicians Network / NIH), alongside leading UK specialists like Professor Rajat Gupta, Dr Ashley Liew, Professor Ming Lim, Dr Tim Ubhi, Dr Vicky Queralt, and Lucy McDonald. The day concluded with a collaborative live Q&A session; a unique opportunity to address clinical queries with practical solutions.
The Community Conference
Our final day welcomed parents, carers, and adults affected by PANS and PANDAS for a day of connection, learning, and hope. Shaped directly by community feedback and our Community Reference Group, the day began with stories of hope from fellow community members; reminding everyone in the room that while the journey can be challenging, nobody has to walk it alone. One of the speakers, and a member of our Youth Board, Ellen Adby has written this blog about the day.
“It was very moving to be able to meet other people on this journey and hear their stories. The emotion and hope in the room was tangible. Thank you to all who made this an incredibly inspirational and hope filled day.”– a Community Conference attendee
Attendees then had the opportunity to join practical, expert-led workshops which covered education, nutrition, and emotional wellbeing, alongside a dedicated space for adults navigating life with PANS and PANDAS. We also shared crucial updates regarding the clinical guideline development process currently underway and what the future looks like post-publication.
“PANS PANDAS UK’s Perspectives on PANS was mind-blowing. I came away with so much: a sense of community, knowledge I’ll put into practice straight away, and lasting connections. It will sustain me and inform my work for a long time to come. Thanks to everyone at PANS PANDAS UK who made it happen.”
– Lucy McDonald, Child PsychotherapistWe finished our conference on an absolute high note (no apologies for the pun) with a beautiful film from PANS PANDAS Unite: a community choir made up of adults and children affected by PANS and PANDAS. With support from PANS PANDAS UK and the London PANS Clinic, PANS PANDAS Unite captured and shared both their experiences and their talents in this inspirational and touching 15-minute showpiece.
“The PANS PANDAS UK team managed to balance the absolute professionalism of the event with a radiating sense of warmth and support. It was clear that the charity has managed to grow its reach to the global stage without losing its heart. I came away feeling heard, knackered, emotional and, most importantly, hopeful.”– a Community Conference attendee
Thank you
To our contributors
Putting together an event of this scale takes a huge team effort, and we consider ourselves profoundly lucky. We want to extend our heartfelt thanks to every single expert speaker, clinician, researcher, and facilitator who generously shared their time, expertise, and passion with us. Because of your willingness to stand alongside our community, medical professionals gained vital knowledge to improve patient care, and patients and families found validation, education and, above all, hope.
To our community
Our community is at the heart of why this conference took place. From raising the initial funds to planning the agenda, the very outset of our planning, community members have been involved in shaping what this event looked like. In addition, the generosity and courage shown by community members who shared their stories and experiences, meant that each of the three days of Perspectives on PANS shone a light on lived experience, and highlighted to all our delegates why supporting this community and driving change is so critically important.
To every single community member who helped shape this day: you are amazing, we see you and we appreciate you.
To the Saltways
We were also joined by an incredible video and photography team from The Saltways and we can’t wait to share their footage with you. We want to thank audience members for agreeing to on-the-spot interviews throughout the event.
Everyone is working hard behind the scenes to prepare the resources, Q&A transcript and key recordings with you. Watch this space!
