Published on 17.07.2020
As Prof. Stanislas Lyonnet, Director of the Imagine Institute, points out, "2019 was a high point for Imagine, with the renewal of its University Hospital Institute (IHU) label as part of the Investments for the Future Program (PIA), accompanied by funding of 17 million euros. This confidence, granted by the Prime Minister following an external evaluation of the highest standards, confirms Imagine's position as "world leader in genetics and the treatment of genetic diseases". This decision reflects recognition of the quality of the work carried out by our teams since the creation of the Institute, and of our ability to develop an effective innovation ecosystem. Other major successes have accompanied Imagine's progress this year, such as the success of Imagine's project on immune deficiencies (ATTRACTion) in the University Hospital Research (RHU) call, another aspect of the PIA".
An opening year focused on international collaborations
"To change the lives of families affected by genetic diseases, stay at the forefront of genetic advances, produce the best science, and make the most of its discoveries, Imagine must collaborate internationally. By attracting talent from all over the world, by disseminating its knowledge, but also by carrying out European or global collaborative projects. 2019 was a good illustration of this, with the launch of international projects that offer new hopes for therapeutic research for families. This openness is also illustrated by the Institute's involvement in major European projects and in European training networks", recalls Prof. Arnold Munnich, President of the Imagine Foundation.
"The opening towards the campus of the Necker-Enfants malades Hospital, towards the medical community, towards patient associations, is essential and is continuing. In 2019, we continued to host dedicated seminars, participate in major regional and national plans and projects related to genetic and rare diseases, and Imagine has been keen to support events dedicated to patient organisations. Imagine has also worked to roll out a social and human sciences programme to improve the quality of life of patients," explains Laure Boquet, General Delegate of the Imagine Institute.
Reducing diagnostic wandering and changing the lives of families affected by genetic diseases
"Imagine's virtuous loop, from care to research, and from research to care, always involves the accurate diagnosis of children and families affected by genetic diseases, which is very often difficult, wandering or even deadlocked. Today, still nearly one child in two is undiagnosed. Genetic tests are increasingly effective, but lead to difficult and lengthy interpretation. There is basically here, in the form of a paradox, one of the greatest challenges of modern genetics: the easier it is to obtain genetic data, the more complex their interpretation is! This is a gigantic question, but we are convinced that there is no glass ceiling at 40% diagnosis for children with genetic diseases. In less than ten years, we hope to double this proportion, that 80% of affected children will have a name for their disease, thanks to cutting-edge research, an excellent clinic, powerful methods and international collaborations," says Prof. Stanislas Lyonnet.