The last day of February is the World Rare Disease Day. On this occasion, for the seventh time a conference was held, co-organized by the Institute of Biochemistry and Biophysics PAS, the Institute of Mother and Child, the Institute of Experimental and Clinical Medicine PAS, the EB Polska Foundation, as well as the Polish Biochemical Society, the Polish Alzheimer’s Society and the Polish Chamber of Laboratory Diagnosticians. This year’s conference, “When Good Wishes Aren’t Enough – or the Possibility of Funding Research in Rare Diseases“, addressed the difficulties of securing funding for research on rare diseases. Of the more than 7,000 rare diseases, only 5% are covered by research that could lead to the development of therapies. This is due to underfunding of science and to a lack of public awareness of the scale of the problem. This leads to a situation where patients themselves and their caregivers undertake the difficult task of organizing financial support for both basic and clinical research necessary for the diagnosis and therapy of rare diseases.

You can read more about the conference on the Medonet portal, and a summary can be found on the website: https://chorobyrzadkie.ibb.edu.pl/o-konferencji; the talks will be available on the IBB YouTube channel.

The celebration of the Rare Disease Day also includes numerous social actions aiming to raise awareness of rare diseases. In order to draw attention to the problem, the Palace of Culture and Science (for the second time) and the building of the Institute of Biochemistry and Biophysics PAS (for the third time) were illuminated in the colors of the Rare Disease Day.

IBB PAS and the Palace of Culture and Science in Warsaw on 29.02.2024 after dusk