March 15, 2023
Rare Disease Conference and Psychological Support in Ukraine
On February 18, 2023, the conference “Rare diseases. Genetics for medical professionals” was held to mark the World Day of Orphan Diseases. The scientific conference was organised by the International Interdisciplinary Association of Medical Professionals’ NGO in collaboration with the RID NGO. The conference was attended by paediatricians, family doctors, neonatologists, geneticists, immunologists, and PID patients from all over Ukraine. Among the important topics were: “Genetic screening of newborns in Ukraine and the world”, and “Severe combined immunodeficiency and not only: possibilities of screening for inborn errors of immunity”. Due to the threat of a massive attack from Russia, the conference was held online.
RID also started a project to support the psychological state of PID patients, their parents, and doctors as the Ukrainian population’s stress and grief levels are high, due to the loss of loved ones and acquaintances. Children and sick people are especially vulnerable. Thus, on January 26, a seminar was held on the topic “How to maintain a balance and where to draw resources”, and another on March 2, on the topic “Quarantine, war, study and work online. How not to lose yourself in these conditions?”. The seminars were attended by PID patients, parents, and doctors. Positive results have already been observed as a result of these meetings. The RID NGO plans to keep providing psychological support to families with PID, because the war in the country continues, and it will take a long time to mitigate its consequences.