CIS Orphan Consortium Expands Partnership!

Today, as part of the II CIS Orphan Forum, agreements were signed on the accession of two new organizations to the CIS Orphan Consortium, whose work is directly related to the development of assistance to patients with rare diseases.

We have officially been joined by:

The Republican Center for Coordination of Orphan Diseases of the Republic of Kazakhstan is a national institution established in 2024 in Astana.

The Center is forming a sustainable model of assistance to patients with rare diseases, acts as a flagship in developing clinical routes, training specialists and forming registries

The Center is headed by MD, PhD. Yernas Tleutaevich Tuleutayev — Deputy Chairman of the Expert Council on Orphan Diseases under the Ministry of Health of the Republic of Kazakhstan

Ilyinskaya Hospital (Russia) — a private multidisciplinary medical institution, on the basis of which the Center for the Diagnosis and Treatment of Autoinflammatory Diseases operates under the leadership of Anna Leonidovna Kozlova — rheumatologist, PhD, immunologist, pediatrician.

Thanks to modern diagnostic methods, personalized therapy and an interdisciplinary approach, Ilyinskaya Hospital provides assistance to patients with severe forms of autoinflammatory diseases, including children.

Academician Alexander Rumyantsev, President of the CIS Orphan Consortium:

There is nothing more valuable than professional communication with colleagues, including foreign ones — it is what motivates us to progress. We see who has progressive formulas, choose the best solutions, and perhaps in the future we will implement similar programs for rare diseases, as was the case in Soviet times.

The addition of new centers strengthens our expert network, opens the way to joint scientific projects, educational initiatives and the introduction of advanced practices in the diagnosis and treatment of rare diseases.

Welcome to the CIS Orphan Consortium!