Slovak Liaison Office for Research and Development and Permanent Representation of the Slovak Republic to the EU
are pleased to invite you to
an informal lecture over a glass of wine
of
Dr. Richard Imrich
on
Rare Diseases
The wait for new alkaptonuria treatment may soon be over
12 December 2018, 19:00
Permanent Representation of the Slovak Republic to the EU
Avenue de Cortenbergh 79, Brussels 1000
Rare diseases are life-threatening and chronically debilitating diseases and have a significant influence on the quality of life of the patients.
Between 6 000 and 8 000 different rare diseases affect or will affect around 30 million people living in the EU and that is why rare diseases have become a priority of the European research funding.
One of the rare diseases is Alkaptonuria (AKU) which attacks the cartilage and leads to extreme joint pain and multiple joint replacements. Slovakia is a country with the highest number of AKU patients in the world. In 2012 the National Institute of Rheumatic Diseases became one of the three testing sites for a new drug nitisinone as a member of DevelopAKUre consortium.
During the discussion session Dr. Richard Imrich will provide his first-hand experience and discuss the challenges in developing novel treatments in diseases with small population of patients, unclear natural history and complex regulatory issues related to international clinical trials.
Come to hear some interesting facts about rare diseases and their impact on the quality of life of the patients.
Please register here before 11 December 2018
Team of organizers