In July 2021, the Inter-regional support center for patients with aniridia “Iris” became the winner of the Presidential Grants competition.
Through the financial support of the grant, the organization was able to print the following brochures and guides for Russian-speaking families with aniridia and WAGR syndrome:
1. Brochure “Congenital aniridia and related syndromes: treatment and prevention” 500 copies.
2. Brochure for teachers of kindergartens and schools “I have aniridia” 500 copies.
3. Brochure “A guide for a patient with congenital aniridia” 500 copies.
4. Brochure “A guide for a patient with WAGR syndrome” 500 copies.
5. Brochure “Congenital aniridia” 500 copies.
6. “Passport of a schoolkid with aniridia” 500 copies.
7. “Passport of a preschool child with aniridia” 500 copies.
8. Flyer “Help me to see the world as you see it!” 500 copies.
See the covers below:
The presidential grant also gave possibilities to travel to remote regions of Russia: Siberia (Omsk city), Ural (Tyumen city), Volga region (Kazan city) where doctors (ophthalmologist Valery Pavlenko, neurologists Natalia Klochko and Georgy Karkashadze, psychologist Galina Gening) examined children and adults with aniridia and WAGR syndrome. Also, during these expeditions, doctors gave educational lectures and seminars to the doctors from these regions about methods of treatment and rehabilitation of patients with aniridia and WAGR syndrome. In Siberia and Ural regions blood samples were taken from patients for free genetic tests. All doctors and patients from regions received free brochures and guides about aniridia and WAGR syndrome. 96 patients with congenital aniridia and WAGR syndrome were examined during these expeditions. 72 doctors from regions attended lectures and seminars.
A webinar dedicated to the International WAGR Syndrome Awareness Day was held on November 13th. The hosts of the webinar were Kelly Dail Trout, a medical consultant of IWSA, Tatiana Vasilyeva, a geneticist at the Medical Genetic Research Center in Moscow, and Gening Galina, the President of the Inter-regional support center for patients with aniridia “Iris”. Kelly Trout made a presentation and together with Tatiana Vasilyeva answered questions of Russian-speaking families with WAGR syndrome from Russia, Kazakhstan, Ukraine, Israel, Germany, Belarus. The meeting was supported by Elena Maksimova, a volunteer translator, and the mother of a child with aniridia.
