The Presence of the Minister of Culture at the Private Screening of the Documentary “The Epic of Parvaneh”
Minister of Culture’s Presence at the Private Screening of the Documentary “The Epic of Parvaneh”
Seyed Abbas Salehi, the Minister of Culture and Islamic Guidance, attended the screening at the Vahdat Hall.
According to cinemadrame, during his first official presence at an artistic event, the Minister was met with a request to raise awareness of the documentary The Epic of Parvaneh to the new government, with the aim of addressing the issues related to the supply of medication and bandages for butterfly disease (Epidermolysis Bullosa) patients.
The unveiling ceremony of the documentary The Epic of Parvaneh took place on Thursday evening, 8th of Shahrivar, at the Vahdat Hall, in an emotional atmosphere, attended by the Minister of Culture, Ayatollah Mustafa Mohaghegh Damad, representatives of various religions, and some foreign ambassadors.
Directed by Alireza Mohammadi, this documentary, which had been briefly introduced in a previous press conference, focuses on the situation of butterfly disease (EB) patients and the challenges they face in obtaining the necessary bandages and medications. Several butterfly disease patients and their families also attended the event.
Hojatoleslam Seyed Hamidreza Hashemi, director of the EB House of Iran, introduced himself at the start of the ceremony and explained how he became familiar with this disease, which began with the birth of his child about two decades ago. Over the years, he has pursued the identification of similar patients—despite the medical community initially rejecting the existence of the disease—and also established the EB House.
He further spoke about the economic sanctions and their impact on the availability of medicine, stating, “The wounds of butterfly disease patients do not understand sanctions, but because of these sanctions, they are unable to access the bandages they need for treatment.”
During his speech, Hashemi played images of patients’ wounds and the cries of his own butterfly disease daughter, which brought tears and sorrow to the attendees. He continued, “We have no government budget; we never had one, even though it was boasted about. We pay high costs to send medicine to other cities via postal services, but we have not received any cooperation from the Ministry of Communications (in the past). Should we be sanctioned by the U.S. and face these issues internally as well?”
Hashemi addressed Minister Salehi, saying, “Mr. Pezeshkian said you were reluctant to take on this responsibility until the Supreme Leader assigned it to you. Tonight, your new duty is to support patients with rare diseases such as EB, MS, and Thalassemia in this national unity government.”
Alireza Mohammadi, the writer and director of The Epic of Parvaneh, who has been active in documentary filmmaking for 30 years, shared that this film was created with an international perspective. “This is its only domestic screening, and it will be independently distributed internationally afterward,” he said.
In another part of the event, Ayatollah Seyed Mustafa Mohaghegh Damad, a distinguished philosopher and religious figure, was invited to speak. He expressed gratitude to those present for their sympathy with the suffering individuals and remarked, “The right to health is one of the most important human rights principles, emphasized by international documents. Every person has the right to strive for their health and benefit from doctors, medicine, and treatment, as stated in Article 25 of the Universal Declaration of Human Rights. How can countries claiming to defend human rights ignore this? This is a dark stain on human civilization, where some prevent these children from receiving treatment. If one is truly human, they must defend human rights.”
He then translated his words into English for the foreign ambassadors present, while the event host had previously summarized Hashemi and Mohammadi’s speeches in English.
At the end of the ceremony, a painting created by one of the butterfly disease patients was presented as a gift to Ayatollah Mohaghegh Damad, and the documentary The Epic of Parvaneh was screened.
