Starting at 9.00 am At Ibn Khaldoun Auditorium
A disease is defined as rare when it affects one person among 2000 people. These rare diseases are treated separately as they are not frequent. Today, between 7000 and 8000 diseases are identified rare, affecting about 350 million people around the world. In Tunisia, more than 400 rare diseases are diagnosed, affecting around 600 thousand Tunisians, among which 85% with genetics reasons. These diseases are most of the time chronic, progressive, and their occurrence is generally diverse and serious: neuromuscular, metabolic, infectious, immune, cancerous etc.
The International Day of Rare Diseases Day, celebrated since 2008 in around 100 countries during the last day of February, is an occasion to remember that the lifetime of an affected patient is a daily and constant health challenge, which calls for a collective participation of different actors in order to bring change to his life including the large public, doctors, researchers, associations etc.
The Tunis Science City, in collaboration with a group of associations supporting patients affected by rare diseases: Tunisian Association of Angelman and Rett Syndromes (ATSAR), the Tunisian Association of Metabolic Illness (ATMMI), Tunisian Association of Persons Affected by Lysosomal Diseases (ATML), the Tunisian Association of Haemophilia (ATH), Tunisian Association of Patients with Primary Immuno-deficiencies (ATUN-DIP), DEBRA Tunisia, Association of Children Affected by Xeroderma Pigmentosum, and Tunisian Association of Hereditary Metabolic Disorders studies (ATEMMH) will celebrated the 13th edition of the International Day of Rare Diseases Day, in partnership with Research in Action Association (REACT), Association of Young Researchers of Pasteur Institute (AJC-IPT, ICHARA, and Tunivision Club ISBST ( Higher Institute of Biotechnologies of Sidi-Thabet).
The programme included lectures, real stories telling, scientific workshops, a workshop about music therapy, as well as a musical show which was performed by the choral orchestra of El Manar music conservatory under the leadership of Mrs. Salma MESSAOUDI.
