Given the wide variety of rare dystonia types, the Children’s Joy Association in Romania stands in solidarity and marks Rare Disease Day each year as an essential effort to raise awareness among both the general public and specialists in this field.
Rare Disease Day was celebrated through an emotional and deeply supportive event, where empathy and authentic human connection were at the forefront. Participants from diverse fields: specialists, psychotherapists, psychologists, athletes, and patients came together to convey a powerful message of solidarity and hope for people affected by rare diseases.
A central element of the event was the art therapy workshops, coordinated with dedication and sensitivity by Gabriela Pralea, psychologist, psychotherapist in training, and art therapy counselor, alongside Lorena Baltariu, psychologist, psychotherapist and art therapy counselor under supervision. These sessions provided participants with a safe and open space where emotions could be freely expressed, and the healing process was supported through the power of art.
The event also included open discussions, where participants explored how a person might physically experience the tension associated with dystonia or anxiety. Through practical art therapy exercises, they were guided to become more aware of bodily sensations and to better understand the lived experience of those affected. The impact of dystonia on mental health was also addressed, highlighting the emotional and psychological challenges patients face from stress and anxiety to difficulties with adaptation and social integration.
The opening speech was delivered by Lecturer PhD Amalia Marinca, who conveyed a warm and professional message, emphasising the importance of awareness and community support for people living with rare diseases. The entire event was organised with dedication by Cătălina Crainic,living with dystonia ,President of the Children’s Joy Association and clinical psychologist committed to supporting patients with dystonia.
Athletes from Fight Team Iguana also played an important role in creating a supportive atmosphere, demonstrating that solidarity can come from all areas of society.
The event was organised at the initiative of the National Alliance for Rare Diseases Romania by the Children’s Joy Association, and took place at Bastion 3, in partnership with the Municipality of Timișoara, through the Timișoara Project Center.
Through this initiative, participants showed that beyond a diagnosis, there are people, stories, and remarkable inner strength. The final message was simple yet powerful: together, we are stronger.
Catalina Crainic Board Member Dystonia Europe and EFNA
and President Asociatia Childrens Joy
.
