IWSA Participates in Russian Rare Disease Conference

Collaboration is innovation: Prospects and news in the field of WAGR syndrome research

The Forum: "Innovative therapy in the field of rare diseases and biotechnology" recently took place in Moscow, Russia, at the Skolkovo Technopark. On December 11, 2020, the daylong, online event focused on promising rare disease research as well as new realities and strategies for working in the post-COVID19 era. Participants considered genetic screening for rare diseases as well as the willingness of doctors to apply new medical technologies. Experts discussed the possibilities of free diagnostics of rare diseases, providing them with the necessary lifelong therapy using public and private programs.

The event featured twenty-six speakers representing a variety of specialities and interests. IWSA Director of Research and Medical Advocacy, Kelly Trout was invited to participate and be a presenter at the conference. Kelly's presentation, titled "Collaboration is innovation: Prospects and news in the field of WAGR syndrome research". The presentation focused specifically on WAGR syndrome and how collaborations with patients, researchers, and other patient advocacy organizations have resulted in recent research projects and activities.

The IWSA has been collaborating with Aniridia Russia for the past several years and supports the Moscow-based Inter-Regional Support Center for Patients with Aniridia.

Many thanks to Galina Genning, PhD, for inviting the IWSA to participate in the conference. We are grateful for Galina's commitment and work on behalf of patients with Aniridia and WAGR syndrome in Russia and Europe. Galina is President of the Inter-Regional Support Center in Moscow, Russian Federation, and also serves as President of Aniridia Russia and as a Board Member of Aniridia Europe.

For more information about the conference, visit https://rarebiotechnology.ru/index.html