RareBoost concludes “Rare Eye Diseases Awareness Month” with educational events and community engagement
Rare eye diseases are diseases that are seen at a frequency of 1 in 2000 or less in society. Most rare eye diseases are genetic in origin, therefore their incidence may be high in some families and can be prevented with genetic counseling. While some rare eye diseases appear at birth, others prsent themselves in adolescence or adulthood. These diseases usually start with symptoms such as vision loss, light sensitivity, eye twitching or strabismus. Regular eye examinations starting from infancy are of great importance for early diagnosis.
Rare diseases can lead to serious disabilities that reduce the quality of life of patients and in some cases, can shorten life expectancy. Unfortunately, in rare diseases, there are very few commercialized treatment options due to the lack of interest from the industry. However, although a complete cure is not possible, patients’ standards of living can be increased with early intervention.
For these reasons, it is important to increase knowledge and awareness on this subject both among healthcare professionals and in society.
As RareBoost, we have designated October as ‘Rare Eye Diseases Awareness Month’ and have left behind a month full of various events on this subject.
As part of these events, on October 10th, World Sight Day, we published an awareness video with Dr. Özlem Ural Fatihoğlu from Dokuz Eylül University (DEU) Pediatric Ophthalmology Clinic to draw attention to rare eye diseases and vision loss in children. You can access the video on our project’s Youtube page.
On October 11th, DEU Ophthalmology Clinic Faculty Member Prof. Dr. Canan Aslı Yıldırım and RareBoost jointly hosted a symposium titled “Rare Eye Diseases: From Clinic to Research” at IBG. The symposium featured presentations by 14 experts and attracted broad participation from healthcare professionals, researchers and patient associations.
On October 17th, an Aegean town where a rare hereditary eye disease is common was visited. This visit was attended by Prof. Canan Aslı Yıldırım, Dr. Görkem Polat and nurse Yeliz Ankara from DEU Ophtalmology clinic; IBG-RUDiP member Assoc. Prof. Sinan Güven; and Prof. Uğur Özbek, Eylül Taşkın, Muhammed Özmen, medical geneticists Dr. Ravza Yıldırım and Dr. Mert Pekerbaş and doctoral student Ayça Yiğit from the RareBoost project team. During the visit, the townspeople were informed about the disease and given genetic counseling, along with an informational brochure.
Finally, we prepared a special interview with Prof. Canan Aslı Yıldırım on rare eye diseases. You can watch the video containing valuable information on the RareBoost Youtube page.
