Community conference
Agenda
08:15 – 09:00
Registration with coffee and pastries
09.00 – 09.30
Welcome, housekeeping and charity update
High level summary from the Research Symposium and Clinical Professionals Conference held on 8 and 9 October.
Andy Koss, Chair of Trustees
Vicky Burford, CEO
09.30 – 10.00
Community voice
Stories of hope and success from community members.
Community parents and members of the Youth Advisory Board
10.00 – 10.30
History and setting the scene
Looking at the history of the conditions, professional disagreements and why PANS and PANDAS is such a hot topic.
Professor Jennifer Frankovich
Dr Susan Swedo
10.30 – 11.00
Clinical guideline update
An update for the community on the creation of the new clinical treatment guideline which is currently under development.
Professor Rajat Gupta
Dr Ashley Liew
Dr Katy Hindson
11.00 – 11.30
Coffee break and time to connect
11.30 – 12.00
What’s next?
A look at what comes next, following the publication of the new clinical guideline.
Vicky Burford, CEO
12.00 – 12.30
Research update
An overview of the NIHR funded project – PANS PANDAS unveiled.
Dr Michael Nunns
12.30 – 13.00
Local Authority Guidance overview
Looking ahead to the publication of new Local Authority Guidance, and what this will mean for families.
Tina Coope
Lucy McDonald
13.00 – 14.00
Lunch
14.00 – 14.30
Workshop 1 with Tina Coope
Working together with your school
Workshop 2 with Katy Gordon-Smith
Nutrition: a practical approach
14.30 – 15.00
Workshop 3 with Dr Vicky Queralt
Strategies for managing your child’s symptoms at home
Workshop 4 with René Blanchard Akre
Interactive session for adults with PANS and PANDAS
15.00 – 15.30
Workshop 5 with Lucy McDonald
Self care
Workshop 6 with Vicky Burford
Networking opportunity
15.30 – 16.00
Coffee break
16.00 – 17.30
Panel Q&A
This facilitated panel session will allow our expert speakers to respond directly to questions from the community. Time will be given to questions and topics that have been submitted by the community in advance, as well as time for open questions from those in attendance.
Facilitated by
René Blanchard Akre
All speakers
17.30 – 18.00
Closing messages and activities
Andy Koss, Chair of Trustees
