In Europe, a disease is considered to be rare if it affects no more than 1 in 2000 people. Diagnosing rare diseases is complicated and requires the collaboration of specialists from different fields. Therefore it has been important to bring together the knowhow about rare diseases into one centre that works on diagnosing, monitoring and treating rare diseases. Previously families affected by rare diseases were largely left alone with their worries, so the Children’s Foundation decided to support the creation of the competence centre in Estonia.
The Competence Centre for Rare Diseases was opened on 5 November 2021 as a part of the genetics department of Tartu University Hospital. The Children’s Foundation funded the launch of the centre. We are also supporting the activities of the social work consultant at the centre from 2021 until 2023, whose task is to help the person affected by the rare disease (or their family) to find the best way to cope with everyday life, which includes help with communicating with various authorities. As coping with rare diseases can be emotionally very challenging for the families, with the help of our kind donors we are also supporting the provision of psychological care for the parents and other family members of the children affected by rare diseases.
Creation of the centre enables effective collaboration between specialists from different fields and makes coping with the rare disease significantly easier for the people affected by the rare disease and their families. In addition, the centre also contributes to scientific research by deepening knowledge about rare diseases and making the diagnosis, maintenance and treatment of rare diseases more efficient.
To book an appointment at the Competence Centre for Rare Diseases, visit their website.