CP Symposium on Childhood Rare Disease and OWL [In-Person Event]

This year is the UCL bicentenary, the 40th birthday of the British Paediatric Surveillance Unit (BPSU), and the 80th Anniversary of ICH.
About this Event

***Update 14 September ***: Thank you for your interest. This is an in-person event, not a hybrid one. We have released a few more tickets for those who would like to attend.

UCL200 / BPSU40: Catherine Peckham Symposium on Childhood Rare Disease and Otto Wolff Lecture

Marking UCL200, the 40th birthday of the British Paediatric Surveillance Unit and the 80th Anniversary of the Institute of Child Health.

Tuesday 22 September 2026 [In-person]; 10:00am-5:00pm

Join us for a joint celebration of the collaboration and impact that UCL’s Great Ormond Street Institute of Child Health and the British Paediatric Surveillance Unit (BPSU) have had on outcomes for children and families affected by rare diseases in the UK and beyond.

Programme

10:00-10:15: Registration (prompt start at 10:15)

10:15: Session 1: Welcome and Otto Wolff Lecture: International keynote address

10:15: Welcome
Dr Rachel Knowles, Clinical Principal Research Fellow at UCL Great Ormond Street Institute of Child Health
10:20: Introducing the Otto Wolff Lecture

Professor Helen Cross, Director, UCL Great Ormond Street Institute of Child Health

10:25: Otto Wolff Lecture – international keynote address

Population surveillance and rare disease research - the Australian experience

Distinguished Professor Elizabeth Elliott, University of Sydney and Children’s Hospital Westmead, Australia / Australian Paediatric Surveillance Unit (APSU)

11:15-11:45: Refreshment Break

Session 2: Perspectives on Childhood Rare Disease

11:45: Introduction to session
Chair: Dr Rachel Knowles

11:50: RARE Revolution
Joe Rumney and Emma Bishop, RARE Revolution Magazine

12:10: Gene therapy for rare immunodeficiencies
Professor Claire Booth, Zayed Centre for Research into Rare Diseases in Children

12:25: Collaborating to create a National Paediatric Secure Data Environment

Professor Andrew Taylor, Great Ormond Street Hospital NHS Trust &

Rebecca Cosgriff, LifeArc

12:40: Role of industry in paediatric rare disease

Professor Alan Boyd MBE, Boyd Consulting Ltd

12:55-14:00: Lunch

Session 3: Celebrating 40 years of partnership with the British Paediatric Surveillance Unit

14:00: Introduction to session

Dr Peter Davis, Chair of the British Paediatric Surveillance Unit (BPSU)

14:10: A new approach to rare disease surveillance: HIV and the BPSU

Professor Claire Thorne, UCL Great Ormond Street Institute of Child Health

14:25: BPSU impacts on practice and policy: evidence from research

Professor Alastair Sutcliffe, UCL Great Ormond Street Institute of Child Health

14:40: International responses to emerging diseases: Zika and microcephaly

Dr Rachel Knowles, UCL Great Ormond Street Institute of Child Health

14:55: Data linkage for long-term outcomes: Childhood Blindness

Professor Jugnoo Rahi, UCL Great Ormond Street Institute of Child Health

15:10-15:40: Refreshment Break

Session 4: Looking to the future - newborn screening for rare disease

15:40: Introduction to session

Chair: Professor Helen Cross

15:45: Generation Study: Newborn whole genome sequencing

Dr David Bick, Principal Clinician ‑ Newborn Genomes Programme, Genomics England

16:00: Evaluating new screening programmes

Professor Anne Mackie, UK National Screening Committee

16:15: Supporting families affected by rare disease

Nick Meade, Chief Executive, Genetic Alliance

16:30: Panel Discussion

Chair: Dr Rachel Knowles. Panel: David Bick, Anne Mackie, Nick Meade, David Elliman, Jugnoo Rahi, Melissa Hill

17:00: Close