The purpose of our project is to raise awareness and education on the issue of the contribution/influence of genes and their mutations in the development of human diseases, especially rare diseases, to popularize this issue, and to highlight the inclusion and integration of people with rare diseases into society.
With the awareness still low, there is also a lack of understanding, lack of interest, fears and barriers between people, which we wish to help remove with this project. In cooperation with the project partners we will offer a set of possibilities how to approach people with rare disabilities and thus help them to integrate into a „healthy“ society.
Explanation of innovative treatment methods, e.g., gene and cell therapy.
Raise awareness about the prevention and diagnosis of genetic diseases.
Highlight the need for inclusion and integration of people with rare diseases.
The exhibition is organized jointly by the nonprofit organization Asgent and the Czech Centre for Phenogenomics at the Institute of Molecular Genetics of the Czech Academy of Sciences, with grant support from Erasmus+ (Asgent and EURORDIS) and the AV21 Strategy program of the Czech Academy of Sciences „Gene and Precision Therapy“ (CCP).
A scientist who enjoys working in the molecular lab as much as promoting science. She believes that basic research is hugely important for our lives, even if it’s not always immediately apparent. Táňa is a member of the Association of Gene Therapy work team.
Dominik is a scientist and entomologist by heart and soul. He is the author of the exhibition „Gene Age“. He is mainly interested in beetles, including their DNA sequences, hence spending much time in the molecular lab. In both his work and free time, he promotes science to the public.
Radoslav recognizes the importance of researching genetic diseases and therefore initiated basic research into rare genetic diseases. His biggest motivation is his son Oliver, diagnosed with a rare genetic condition – Angelman Syndrome.
Lenka holds many roles: Fundraiser, PR communicator, project manager. Her main motivation is her son Oliver. She doesn’t see her son’s disability as a barrier to a happy life, but as an opportunity to learn to live in the present and view the world differently.
A researcher studying the functions of genes using model organisms and the director of the national research infrastructure CCP. Radislav is also the chairman of the executive committee of the global organization IMPC, aiming to identify the functions of all mammalian/human genes. He also operates in the strategic working group „Health and Food“ of the European Union.
Jan leads a team analyzing the roles of individual genes and gene functions in embryonic development and regulating the physiology of the entire organism. He focuses on the genetic causes of rare diseases, regulation of mineralized tissue development and possibilities for genetic intervention and gene therapy strategies.
Markéta helps scientists with the processing of Czech and international projects. She also organizes conferences, educational, and PR activities for the center. Her motivation is to help transform initial scientific ideas into outputs that can lead to better treatment or disease diagnosis.
She has been working since 1982 at the Pediatric Neurology Clinic of the 2nd Faculty of Medicine, Charles University and Motol University Hospital in Prague. In 2008, she founded the Center for Hereditary Ataxias FN Motol with nationwide operation, which in 2018 gained the status of a reference center within the European Reference Network for Rare Neurological Diseases (ERN-RND). She specializes in neurodevelopmental, neurometabolic, neurodegenerative, and neurogenetic rare diseases.
Jiří Forejt uses the mouse genome in his research as a model to understand the laws of new species‘ emergence and study human development and disease inheritance. The inbred mouse strains PWD/Ph and PWK/Ph, which originated in his lab over 30 years ago, are used in genetic laboratories in countries across four continents, and his chromosome substitution strains, adopted as reference by The Jackson Laboratory in the USA serve as a biomedical model for systemic genetics.
She studies Media Studies at Charles University and combines her knowledge of culture with effectively managing and coordinating the exhibition. With her experience from the nonprofit sector, she brings energy and creativity to the project. Jarmila believes that science can inspire everyone and thus strives to spread awareness about the topic of rare diseases among her peers. The same goal that the „Gene Age“ exhibition aims to achieve.
One of the main goals of our exhibition is education. That’s why we bring you an online version of the exhibition with significantly more information than you can find at our live event. To make the exhibition happen and operate, we need our visitors to fill out a simple quiz related to the exhibition. It’s not complicated, so give it a try!
„I have decided to take on the patronage of the exhibition ‚Gene Age‘ because it is essential to understand the connection between genetics and our uniqueness. Presentations like this exhibition are crucial in breaking down the barriers that people with rare diseases often encounter in their daily lives.“
„It’s vital to support awareness of such unique research and to help not only Oliver but all angel children, giving them and their families hope for a fulfilled life.„
For each quiz you complete, our sponsors contribute funds towards genetic disease research. Your participation genuinely makes a difference. Additionally, you stand a chance to win attractive rewards, such as entry tickets to Techmania in Pilsen or to the World of Technology in Dolní Vítkovice.
Supplementary Materials