By Dace Liepina, former OIFE Vice President

The iCAN (International Children’s Advisory Network) Summit 2022 took place in Lyon, France. It was an event for young people aged 12 to 19 from all around world to meet, exchange ideas and learn more about rare diseases and children’s rights, health and data protection. Many of the young participants were living with a chronic or rare disease, but some did not have any diagnosed medical condition. All were interested in having their voices heard by individuals, industry and government agencies who can make a difference in pediatric healthcare.

In July my daughter Emilija, thanks to a grant from European Joint Programme on Rare Diseases (EJP RD), provided by TEDDY – European Network of Excellence for Paediatric Research, had an opportunity to participate in iCAN Summit 2022, which took place in Lyon, France. It is an event for young people aged 12 to 19 from all around world to meet, exchange ideas and learn more about rare diseases and children’s rights, health, and data protection.

In 5 days packed with information, kids aged 12-19 were participating in different workshops, listening to presentations, and learning how to be Young Patient Advocates.

Day one was an introduction to rare diseases with sessions like learning about rare diseases and its environment, connecting patients in rare diseases, children rights, health and data protection and a presentation by EURORDIS on young citizens participation in European policies.

Day two started with presentation about ethics and rare diseases, followed by information about pediatric research and innovation and about assessment and appraisal of new drugs. In the evening was activity in city center – play and discover Lyon.

Next morning, we met at Lyon Hospital to have a tour around the hospital. Afterwards there were presentations about transition and therapeutic education, adapted physical activity and mobile apps and GDPR. Then all kids were divided in 4 groups and had case simulations and some physical activities.

The fourth day was filled with group work all day long. In the evening we went out to city to have a party to celebrate Bastille day. It was so great to see all the young people dancing, playing games, singing, taking pictures and talking, talking, talking. Also, we as parents had a possibility to network and enjoy the beautiful summer evening which ended with fireworks.

The last day of the summit was dedicated to group work and presentations. Both me and Emilija loved the possibility to learn a lot of new things and most of all to meet with new people from all over the world. You can find more about The iCAN (International Children’s Advisory Network) here.

This article was first published in OIFE Magazine 3-2022.