Rare Diseases Day was observed in Timisoara, Romania during the art exhibition’s 4th edition “Look at me from the inside” which is a continuation of the exhibition’s 3rd edition “Captive in my body”.
This art exhibition reflects rare diseases including some forms of dystonia.
The purpose of this exhibition is to draw attention to the public in an artistic, subtle way to the rare diseases that are estimated at between 6,000 and 8,000 variations. Over 95% of these rare diseases have no treatment anywhere in the world: 75% affect children and over 80% have a genetic background.
Viewed by society as a rather phenomenon, it is estimated that approximately one million of the population in Romania are living with a rare disease and strive to manage various diagnoses. Many patients and their families that are affected by rare disease live with feelings of insecurity and find it difficult to cope with
the stigma while at the same time strive to fight for treatments to improve quality of life on both physical, emotional, material, and social levels.
Ms. Catalina Crainic, organizer of the exhibition, President of the “Children’s Joy” Association, and patient suffering from cervical dystonia, stated: «Through the art exhibition look at me from the inside», we want to convey that everything that we contain in our inner universe, we manifest in the outside world, as a look in the mirror, either constructively or destructively influencing human life, both ours and those around us. So, we want to fill this inner world with color, joy and positive feelings, peace, acceptance, gratitude, to generate and share from within to society what we must give, because only by giving can we receive in return.
During this campaign, talented 11th grade students from the High School of Fine Arts Timisoara made the joint work entitled “Free Spirit”. Artists also donated to the association in the works of a past exhibition edition “Captive in my body”. Students of the creative workshop “Childrens Joy” contributed through creative workshops that were held to help raise funds for the association under voluntary coordination by Ms. Catalina Crainic.
Although most rare diseases put the affected person in the position of being “a person with a disability”, the “Childrens Joy” Association from Timisoara wants to convey that people facing a disability can maintain their moral values, can seek evolution and their own knowledge, development, add spiritual enrichment to keep these values, the society is a richer one.
The association of People with Dystonia “Children’s Joy” based in Timisoara, regularly organizes creative workshops with healthy children to help support monthly expenses, and awareness campaigns for people in vulnerable categories. Fundraising through workshops helps patients with dystonia fight against discrimination and labeling, but also stand for patients’ rights through approaches to the authorities and by connections with patients about equal opportunities.
The exhibition edition “Look at me from the inside” takes place at the Banat Museum, Therezia Bastion and is open for a 2-week period starting on February 28th when the Rare Diseases Day is being held. After completion, artwork will be available for sale and the funds will be directed to the association to organize workshops for patients with dystonia in Romania.
Catalina Crainic, President Asociatia Children’s Joy, and Board Member Dystonia Europe
