In remembrance and in solidarity, on Rare Disease Day, 29 February 2024, at 7 p.m., buildings around the world will be lit up in pink, light green, light blue and purple to symbolise the day. Traditionally, our building of the Faculty of Electrical Engineering of the CTU in Dejvice will also join the chain of lights as a show of support.
Rare diseases usually cannot be cured, but specialised multidisciplinary care in the centres helps patients a lot
Rare diseases put people in difficult situations. The long road to a correct diagnosis, the lack of information about individual diseases, the difficult search for specialised care, the inadequate social support settings, the misunderstanding of the environment.
"We are striving for the health and social sectors to gradually change and for their possibilities to be closer to the needs of people with rare diseases and their families," explains Anna Arellanesová, chairwoman of the Czech Association for Rare Diseases (CAVO).
There is a consensus that creating a network of highly specialised centres for rare diseases and linking them to other parts of the health and social system is essential to improve the quality of care for patients with rare diseases.
Further information can be found via the Czech Association for Rare Diseases (CAVO) website www.vzacna-onemocneni.cz.
