Opening of the II CIS Orphan Forum
The II CIS Orphan Forum, the largest international platform dedicated to rare diseases, opened in Moscow today.
The event was opened and the Forum participants were welcomed:
Alexander Rumyantsev, Academician of the Russian Academy of Sciences, President of the CIS Orphan Consortium, President of the Dmitry Rogachev National Medical Research Center for Pediatric Hematology and Oncology of the Ministry of Health of the Russian Federation:
Exactly one year has passed since the first CIS Orphan Forum. It was then, following the discussions, that the most important decision was made to create the CIS Orphan Consortium as a permanent intercountry interaction platform. Today, the Consortium already includes more than 20 organizations from different countries of the region. The main event of this year is, of course, the May resolution of the World Health Assembly. For the first time at the UN level, rare diseases were officially recognized as a global priority, and now each country must take rare diseases into account when planning its healthcare system.
Rafael Shavaliev, Director of the Department of Medical Care for Children, Maternity Services and Public Health of the Ministry of Health of the Russian Federation, read out a greeting from the Minister of Health of the Russian Federation Mikhail Murashko:
Today, more than 300 million people in the world live with rare diseases. The Russian Federation has developed a comprehensive system of measures to improve care for patients with rare diseases. In May 2025, the World Health Assembly adopted the first-ever resolution that officially recognized orphan diseases as an international healthcare priority. I am convinced that only through joint efforts can we create an effective system of care for patients with rare diseases. I am confident that holding the forum will be an important step towards forming a unified strategy to combat rare diseases in the CIS and BRICS countries. Let's work together to ensure that every patient with a rare disease receives the necessary help and support.
Elena Shamal, Advisor to the Department for Cooperation in Political, Humanitarian and Social Spheres of the CIS Executive Committee, Secretary of the Council for Cooperation in Healthcare of the CIS:
Today, it has already been said that there are about 300 million people in the world who suffer from orphan diseases. According to some data, there are many more of these patients, and some statistics say that there are about half a billion of them. And the difference in numbers indicates that in fact today in the world there is no clear, understandable registration of statistics on these diseases, despite the fact that about 50% of our countries around the world already have their own policies for providing assistance to patients with orphan diseases. It is great that experts have gathered today to discuss such a complex topic, but so understandable for us. It is the exchange of experience in orphan diseases that is one of the most important. Because the global experience is not that big, and in a single community we can achieve better results
Nuriya Musina, Executive Director of the CIS Orphan Consortium, Director of International Cooperation at NAERES:
When we first gathered in Moscow last June, it was just an idea to hold a conference on the CIS. But by the end of the meeting, we had the idea to create an Orphan Consortium. It was a real impromptu, and I am grateful to all my colleagues who supported this initiative. We signed an agreement in October, and today the Consortium includes more than 20 organizations. We see that the platform is working: specialists find each other, countries exchange cases, the first patients with rare nosologies appear, and there are already examples of specific assistance. This means that we are forming a lively, working environment - a truly useful expert community. We want to move forward — expand the circle of participants, go beyond the CIS, work more actively with representatives of BRICS, the Middle East and WHO.
The forum continues. Ahead are international sessions, reports from WHO, CIS and BRICS countries, discussions on strategy, drug provision, CAR-T and the role of patient organizations.
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