Conclusion

Thank you for your attention! We hope that we have brought you closer, in a simple and entertaining way, to a tiny fraction of genetics that concerns each and every one of us. What intrigued you the most? An introduction to genetics, an overview of rare diseases, or the stories of patients living with them?

We’d appreciate it if you could share your thoughts in our questionnaire. By filling it out, you’ll also support research into the treatment of rare genetic diseases, and you might even win some prizes. 

Contributors to the Exhibition:

Authorship Team

• Tatiana Aghová – Exhibition Author
  • A scientist passionate about working in the molecular lab as much as promoting science. She believes deeply in the significance of basic research for our lives. Tatiana is a member of the Gene Therapy Association’s working group.
• Dominik Vondráček – Exhibition Author
  • A scientist and entomologist at heart. His primary focus is on golden beetles, including their DNA sequences. He’s deeply involved in science popularization both professionally and in his free time.
• Radoslav Hajgajda – Chairman and Co-founder of the Gene Therapy Association
  • Recognizes the importance of genetic disease research, leading foundational research on rare genetic diseases. His main motivation is his son, Oliver, diagnosed with the rare genetic disorder – Angelman syndrome.
• Lenka Hajgajda – Co-founder of the Gene Therapy Association
  • Wearing multiple hats: Executive Director, Fundraiser, PR Communicator, Project Manager. She sees her son Oliver’s disability not as a barrier but as a chance to live in the moment and see the world differently.
• Radislav Sedláček – Scientist and Director of the Czech Center for Phenogenomics, UMG
  • He investigates gene functions using model organisms and leads the national research infrastructure, CCP. Also chairs the global organization, IMPC, aiming to understand the function of all mammalian/human genes, and serves in the EU’s „Health and Food“ strategic working group.
• Jan Procházka – Scientist at the Czech Center for Phenogenomics, UMG
  • Leads the team analyzing individual genes’ roles and their function in embryonic development and the organism’s physiology. Focuses on the genetic causes of rare diseases and strategies for gene therapy.
• Markéta Morská – Project Manager at the Czech Center for Phenogenomics, UMG
  • Assists scientists with Czech and international projects, organizes conferences, and manages PR activities. She’s motivated by turning scientific ideas into results that could better disease treatment or diagnosis.
• Anna Hlavicová – Editor
  • Not just an editor, Anna also lives with a rare disease. From puberty, she has been engaged in copywriting, writing, and social networking. She has written articles focused on health and social topics for professional journals.

Acknowledgements:

We sincerely thank the entire team and all partners for their outstanding work on the „Genetic Era“ panel exhibition. Through your efforts, we gained a better understanding of genetics and its impact on our lives. Special gratitude to all who shared their personal stories. Your bravery and sincerity allow us to better understand your personal experiences.

Acknowledged individuals include:

• MUDr. Alena Zumrová, Ph.D.
• prof. MUDr. Jiří Forejt, DrSc.
• Bc. Anna Arellanesová (ČAVO)
• Ing. René Břečťan (ČAVO)
• Virginie Hivert (Eurordis)
• Sharon Ashon (Eurordis)
• Patients from the stories:
  • Jan
  • Valerie
  • Anna
  • Josef and his mother, Stanislava
  • Alex and his mother, Lara
• Jarmila Kytlicová
• Jana Tlustá
• The Advertia Agency Team
• The Addicts Agency

Partners – Defining the Scope for Organization Description

Association of Gene Therapy – The primary mission of the non-profit organization Association of Gene Therapy is to support the basic research of rare diseases in the Czech Republic. The entire project was inspired by Oliver, a 6-year-old boy, son of Mr. and Mrs. Hajgajda, the founders of Asgent.  

Czech Center for Phenogenomics – The Czech Center for Phenogenomics is the only specialized facility in the Czech Republic that creates genetically modified mouse and rat models for biomedical research at the level of the best world centers. Additionally, it uses the most advanced standardized phenotyping to characterize the manifestations of gene functions.

EURORDIS – The international alliance EURORDIS encompasses 988 patient organizations for rare diseases in 74 countries worldwide. The organization brings to the project exceptional expertise and experience in transnational collaboration.

ČAVO (Czech Association for Rare Diseases) – The mission of the Czech Association for Rare Diseases is to bring together patient organizations for rare diseases and individual patients, represent their interests, and strengthen awareness of the specific issues of rare diseases among healthcare professionals, representatives of national and international institutions, and the public.