BSGCT Patient and Public Involvement and Engagement Award 2024

The BSGCT Patient and Public Involvement and Engagement Award (PPIE) Award 2024 has been jointly given to the Sowden Lab and the Norrie Disease Foundation, for the Norrie Disease Conference 2023 that they co-developed to bridge the gap between families, scientists and clinicians. The event brought together people affected by Norrie disease and their families with researchers and clinicians, and strengthened relationships and mutual understanding, of particular importance in ultra-rare diseases like this one. The conference highlighted the importance of PPIE, collaboration and sharing of information within the community for the families to be connected to the ongoing research effort into finding a treatment for the condition. The event also helped to establish links with an international network of people affected by Norrie disease. This conference is an excellent example of the type of good practice that the BSGCT PPIE award was designed to encourage and promote.