“The Gene Age” Travelling Exhibition

09. 10. 2023 Event

The outdoor travelling exhibition, together with a website containing an online version of the exhibition, aims to introduce the general public to the basics of genetics and the DNA molecule in relation to rare genetic diseases, their diagnosis and possible treatment in an entertaining way. The purpose of the exhibition is to raise awareness and…

Discussion “Can a rare disease concern me or my loved ones?”

25. 01. 2024 Event Lecture

26 February 2023, Hradec Králové / Come and join the debate on the topic “Can a rare disease affect me or my loved ones?” Why are so few rare diseases curable? Gene and cell therapy – when science fiction became reality. Leading Czech scientists and physicians will discuss current and future prevention and treatment options.…

Rare Disease Day 2024

15. 02. 2024 Event

29 February 2024 / Raising awareness and generating change for the 300 million people worldwide living with a rare disease, their families and carers. Informace o aktivitách v České republice na webu České asociace pro vzácná onemocnění.

IMPC Spring 2024 Meeting – ‘Beyond the Genome’

23. 02. 2024 Event

28 – 30 April 2024, Cape Town, South Africa / The first ever IMPC “Spring” Meeting to be held in Africa and aims to convene leading international experts to deliver overview lectures that provide a global perspective on our topic: “Beyond the Genome”. Advances in nucleic acid-based therapies, based on the conventional coding genome, but…

12th European Conference on Rare Diseases and Orphan Products

15. 02. 2024 Event

15 – 16 May 2024, hybrid event / The ECRD is the largest, patient-led, rare disease policy-shaping event held in Europe. By bringing together people with rare diseases and patient advocates, policy makers, healthcare industry representatives, clinicians, regulators and Member State representatives, EURORDIS harnesses the power of this extensive network to shape goal-driven rare disease…