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eye-YPAG at iCAN, Bari, Italy 2024

By Vijay Tailor-Hamblin,

 

Earlier this month, five member of our eye-YPAG, a group
facilitator and three parents attended the annual summit of the international Children’s Advisory Network (iCAN) summit. The meeting was hosted by the Teddy Network (European Network of Excellence for Paediatric Research) and took place in Bari, Italy, which was attended by 99 young people, plus parents and group facilitators, from 15 countries.
As a poster, we presented our work with myopia researchers, co-moderated two workshop sessions and crowned the winning logo for a new clinical trial that will open at Moorfields and sites across UK and Europe in autumn 2024. At the same time, we deepened existing and built new friendships with other young people sharing our passion for biomedical research and advocacy for children with health conditions.

Niamh felt that she learnt about new ways to advocate for young people, and particularly enjoyed the activity of the week, where we learned to make a stop motion animation, complete with soundtrack. For all activities, the 99 young people were grouped into 9 pods, or small groups – named after pasta – with plenty of time to make new friends. Making the animation was also Muminah’s favourite activity. On the last day, the finished animation was presented to all iCAN summit participants, to enormous applause. What a fantastic achievement!

 

Orla particularly enjoyed a session run by a pharmaceutical company which gave young people the opportunity to discuss in depth their experience with and opinions about clinical trials, in a fun and interactive format. She was also particularly impressed by the power of storytelling. At the start of every day, one young person told their story, showing how strong kids with rare diseases really are.

 

Designing pages for the iCAN colouring book was one of everyone’s favourite activities – this book will be given out to kids with chronic illnesses who have to spend a long time in hospital.

 

We also got inspired about what more we could do at our eye-CAN, for example visiting other hospitals, simulation surgery, fundraising, volunteering in our local communities – and maybe come up with our own research idea and run a research project!

On some afternoons, we enjoyed guided tours of the old town in Bari, Museums, the Cathedral, and a half-day trip to the coast – Monopoli – and a World Heritage Site – Alberobello. One trip was educational – a visit to the local children’s hospital (Ospedale Papa Giovanni XXXIII), where we learnt about screening new-born babies for diseases. Why is it that in Italy they screen for 61 conditions, and in the UK only for 5? We saw real life examples of just why it is so important to test babies within 48 hours of birth – many conditions can affect children’s quality of life much less if they begin treatment very early.

 

 

 

 

Jasmine’s favourite activity was the visit to the university (Universita Degli Studi di Bari Aldo Moro), where we watched how soluble pills, capsules, syrups and even gummy sweets for kids are made. Some medicines are made using 3D printers. We had the opportunity to make our own capsule tablets (with no active ingredients).

 

 

All week it was very hot, and we had lots of delicious Italian ice cream. The final celebration before we had to say goodbye was a party in a beautiful garden lit by fairy lights, where everyone enjoyed good food and great music.