From October 1st to October 30th, as part of the project “Help me see the world!”, 7 expeditions were made by a pool of doctors (an ophthalmologist, a neurologist, a geneticist, a low vision specialist, and a psychologist) in different regions of Russia (Alaty, Nizhny Novgorod, Bashkortostan, Volgograd, Tuva, Yakutya and Arkhangelsk) with the purpose of training doctors to deal with patients with congenital aniridia (151 doctors participated), as well as for the purpose of charitable examinations of patients with aniridia in these regions (128 patients underwent charitable examinations). Blood was collected from patients without a previous genetic analysis for genetic diagnostics in Moscow. All doctors and patients were provided with the necessary methodological literature on the disease.
On October 14, the Radio “Mayak” aired a program about the work of the project “Help me see the world!” implemented by the Interregional support center for patients with aniridia “Iris” with the participation of the president of the organization Galina Gening and the director of the charity “Creation”, which helps patients with congenital aniridia in purchasing rehabilitation equipment and paying for examinations at the Rare Eye Diseases Center. In addition to the radio appearance, 59 news releases in the form of reports and articles were published about doctors’ expeditions to various regions of Russia.
Two articles have been published: one in “Optical magazine – Children” (“Help me see the world!”, May 2024, author Galina Gening), and the other in the collection of scientific articles “Psychology of human states: current theoretical and applied problems” (“The impact of rare genetic diseases – congenital aniridia and the WAGR spectrum on the palette of mental states of patients and their family members”, author PhD in psychology Galina Gening, November 2023)
Participation in the international conference September 29th – October 1st 2023 USA, Charlottesville “PAX6, Aniridia and Beyond” (participation format – online). Based on the conference’s results, all members of the organization diagnosed with aniridia and WAGR spectrum from (875 people), as well as doctors (52 people) working in the field of congenital aniridia and WAGR spectrum, were sent reports in Russian language.
From 1st October 2023 till 1st of July 2024, 181 patients with congenital aniridia and WAGR received free prescription glasses with photochromic lenses, sunglasses with 100% UV protection. Free glasses were provided by the “Kids vision” charity.,
146 patients with congenital aniridia and WAGR were provided with free full medical examinations at the Rare Eye Diseases Center (DocDeti Evidence-Based Medicine Clinic, Moscow), 38 patients got free online consultations with a neurologist – geneticist.
10 different types of leaflets, brochures and handbooks were printed for doctors, patients and teachers working with children with congenital aniridia and WAGR at school and nursery. 3973 copies of leaflets and brochures were distributed in various clinics and regions of Russia, Belarus and Kazakhstan.
48 patients with congenital aniridia and WAGR (3 adults and 45 children) received the free following rehabilitation tools: 1. Electronic video magnifier “Connect 12” with 25x magnification in the distance and near – 11 people. 2. Device for measuring intraocular pressure at home ICare with a set of disposable tips (100 pcs.) – 15 people. 3. VR system for the visually impaired (developed by the company “Sensor-Tech”) – 20 people, monocular (Kepler system) – 6 people. The rehabilitation equipment were provided by the charity foundation “Creation” and the “Sensor-Tech” company.
In April 2024, the Scientific Committee of Interregional support center for patients with aniridia “Iris” developed an Intellectual Map for Congenital Aniridia and “Iris” distributed it to 250 doctors and patients in various regions of Russia, Belarus, Kazakhstan.
On September 10th 2024 took place the Second Congenital Aniridia and the WAGR Spectrum conference for Russian-speaking doctors and families with aniridia. The conference was held at the “Crocus-Expo” International Exhibition Center as part of the International Optical Exhibition. 47 doctors and 97 patients and their family members from Russia and the Russian-speaking countries took part in the conference. The conference was broadcast online by the First Medical Channel to an audience of 200,000 doctors.
