The new issue of our scientific journal Rare Diseases and Orphan Drugs is now online. The issue contains 7 publications on various topics. The editorial is “Rare diseases in 2020 – what did we learn?”.
2020 is over, but its consequences and effects will certainly continue for a long time. The COVID-19 pandemic is an unprecedented challenge for all societies and health systems. On the other hand, every crisis brings opportunities for rethinking, change and progress. Rare diseases and people affected in some way or working in this field are an excellent example of a society that has managed to come together and work together to overcome a particular problem. A direct comparison between COVID-19 and rare diseases is, of course, inapplicable and inappropriate. But in the end, the principles and values of universality, access to quality healthcare, justice and solidarity are generally valid and retain their fundamental function and paramount importance in every public health issue.
One of possibly the most important lessons of 2020 is the perceived role of communication and the sharing of knowledge and expertise in a virtual environment. This is not a new topic at all. Everyone so far has been actively communicating on the Internet, taking online training courses and attending virtual events. But the mass use and lack of an alternative other than online communication in 2020 is undoubtedly something new. Virtual communication cannot replace or fill the presonal one, but it definitely has its advantages and strengths. The Eleventh National Conference for Rare Diseases and Orphan Drugs clearly demonstrates some of them. Read the whole article here.