On 9 November, 2019 physicians Dovilė Kalibatienė and Viktoras Sutkus from the Children’s Rare Disease Coordination Center participated in the event of the Association of Children’s Rare Diseases and Spina Bifida and Hydrocephalus Association. The main discussion topics were: emerging challenges, working together to find new solutions to old problems. Physician Viktoras Sutkus introduced the Day Care Center for Children’s Rare Diseases Coordination Center, which started operating in early 2019, and told about the services provided and their availability. The following objectives were formulated during the discussion: to pay more attention to the evaluation of psychosocial functioning and recommendations for its improvement, to provide more information about the possibilities of psychological help, to publish the availability and procedure of day care, to cooperate more with patient organizations management services. The meeting took place at the headquarter of the Childrens Rare Disease Association, it was presenting the services already provided by the association and future plans. One of the biggest innovation is the appointment of a family doctor at a primary care center set up by the Association for Rare Diseases of Pediatrics and their families. We believe that such events are a great impetus to better understand and put into practice the new concept of patient care for rare diseases: comprehensive, consistent and ongoing support must be available to every family.