Acıbadem University Rare Diseases Club, Rare Diseases Network and Rare Diseases and Orphan Drugs Application and Research Center ACURARE collaborated on the "World Rare Diseases Day: Access to Rights in Rare Lives" event on March 2nd, 2020.
The event was aimed to hold 3 sessions: Rare Diseases in Preschool Period (0-6 years), Rare Diseases in Education Age (7-24 years) and Rare Diseases in Business Life (25+ years). At each session a clinician and rare patient rights lawyer spoke with individual/family with a rare disease. After these sessions, Psychiatrist Dr. Alişan Burak Yaşar talked about the processes after the diagnosis of the disease.
Within the event; “Rare life experience of 0-6 years” by Mine Keskin Ergin from NCL Association, “Rare life experience of 7-24 years” by İlayda Gülbeyaz from Cystic Fibrosis Association, “Rare life experience of 25+ years” by Ayşe Kora Akersoy from PAHSSC Association, speeches were made.
Under the header of “Clinician's Eye”; In the 0-6 age session Prof. Dr. Yasemin Alanay, in the age of 7-24 Dr. Özlem Akgün Doğan and in the age of 25+ Dr. Nihan Hande Akçakaya, “Which rare diseases are often diagnosed in the relevant age group?”, “When and how can the treatment be started?”, “How does the follow-up process continue after the diagnosis?” questions were answered by them. Under the heading of "What are our rights?" Lawyer Alim Yılmaz explained how to access rights in rare diseases for all age groups and how to apply to which institutions.
Among the event, there were pleasant moments with the participants with painting activities and a small concert.Last Updated At: 28/02/2017