Üsküdar University Rare Diseases Club Organized Rare Lives Workshop

Üsküdar University Rare Diseases Club successfully completed the "Rare Lives Workshop" organized in cooperation with the Rare Diseases Federation and Innorare Start-up on December 8, 2024 at Acıbadem University Kerem Aydınlar Campus. The event was attended by 60 people living with rare diseases, including representatives from Acıbadem University, Biruni University, Turkish-German University and Üsküdar University.

The Event Discussed the Social Reflections of Rare Diseases

During the workshop, the challenges faced by individuals with rare diseases and solutions to these challenges were discussed in depth. Participants exchanged ideas under five main headings (Psychology, Diagnosis, Treatment and Access to Medication, Employment, Social Life, Education) and identified solutions in detail. Federation officials and observers at the workshop recorded the demands of the participants.

Üsküdar University Rare Diseases Club (ÜÜRARE) took an active role in the planning and execution of the organization and undertook observation and reporting duties in the working groups. The event was reported to be submitted to the Ministry of Health with the contributions of representatives of 25 rare disease-related associations.

Important Messages at the Closing Session

In the closing session held at the end of the event, Hanife Bayraktar, Chairperson of ÜÜRARE Board of Directors, made an important speech on the employment demands of individuals living with rare diseases.

This valuable event, while aiming to improve the quality of life of individuals living with rare diseases, once again demonstrated Üsküdar University's commitment to social responsibility.