Commissioner for Human Rights

The Office of Human Rights Defender of the Republic of Poland held a conference devoted to the theme of  "Rare diseases and the threat of exclusion ". The conference was organized by the Human Rights Defender in collaboration with the ISI Lazarski University.

The meeting was devoted to the issue of social exclusion of people with rare diseases and the prevention of discrimination . There is an urgent need for appropriate national level policy solutions targeted at this group, as well as for adequate physical, social and legal support, which would guarantee the implementation of the principle of equal treatment.

The conference was attended by representatives of the Ministry of Health, the National Health Fund , patient organizations, institutions responsible for education, social services and healthcare, as well as representatives of  academic community.

Under the definition of the European Parliament, rare diseases are those where the incidence is below the threshold of five patients with 10,000 , and all these diseases are serious , chronic and often life-threatening . There are around 8000 rare diseases, therefore, although each of them is rare, taken together they constitute a serious social problem, affecting up to about 1.5 - 2 % of the population . According to the estimates of the European Commission rare diseases affect between 27 - 36 million people in the EU. Under a similar estimate  there are about 2-3 million patients with such conditions in Poland.