Community Conference
Our Perspectives on PANS Community Conference took place on Saturday 10th October.
This in-person event was dedicated to parents, carers and adults (18+) affected by PANS and PANDAS.
This event was an amazing opportunity for our community members to connect with one another. We shared charity updates, provided expert-led workshops and were thrilled that we were able to include a Panel Q&A with leading UK and international clinicians.
We want to say a special thank you to our Community Reference Group members, and to the wider community for completing our Community Conference Survey – we built this day around what you told us was most important to you.
Recording
Session title
Presenters
Community voice
Stories of hope from the PANS PANDAS UK Youth Board and community members.
The PANS PANDAS UK community.
History and setting the scene
This presentation explores the history of the conditions, professional disagreements and why PANS and PANDAS is such a hot topic.
Professor Jennifer Frankovich and Dr Susan Swedo
Clinical guideline update
An update for the PANS PANDAS UK community on the creation of the new clinical treatment guideline, which is currently under development.
Professor Rajat Gupta, Dr Ashley Liew and Dr Katy Hindson
PANS PANDAS UK – what next?
PANS PANDAS UK CEO VIcky Burford discusses the immediate and long-term goals for the charity.
Our CEO Vicky Burford.
Slides coming soon
Mapping the research landscape
An research update from of the NIHR funded project, PANS PANDAS unveiled; a tool created to document the need for improved funding and further research for PANS and PANDAS.
Dr Michael Nunns, Isca Research.
Practice Principles for Local Authorities
We look ahead to the publication of our practice principles for Local Authorities, and what these will mean for families.
Tina Coope and Lucy McDonald.
Expert panel Q&A
This facilitated panel session allowed our expert speakers to respond directly to questions from the PANS PANDAS UK community. The panel comprised Professor Jennifer Frankovich (Stanford University), Dr Susan Swedo (PANDAS Physicians Network / NIH), Professor Rajat Gupta, Professor Ming Lim, Dr Tim Ubhi, Dr Vicky Queralt, Dr Katy Hindson, Dr Michael Nunns and Lucy McDonald; facilitated by René Blanchard Akre.
All conference speakers
PANS PANDAS Unite choir
We finished our conference 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 showpiece.
PANS PANDAS Unite
