All-Russian Conference "The Light of Goodness of Russia: The Path to Saving Rare Lives"
On March 18–19, Moscow hosted the All-Russian Conference “Light of Goodness in Russia: the Path to Saving Rare Lives” — one of the key events in the field of rare diseases. Representatives of the CIS Orphan Consortium took an active part in the event.
The opening speech of the conference was given by Tamara Uktamovna Aripova, Academician of the Academy of Sciences of the Republic of Uzbekistan, Professor, Director of the Institute of Human Immunology and Genomics.
The key points of her speech:
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Rare diseases affect millions of patients around the world — despite the fact that each of them is rare.
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There are more than 7,000 rare diseases known in the world, but only about 5% have registered therapy.
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The main problem is late diagnosis: the path to diagnosis takes on average 5-7 years.
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Systematic work is needed to raise awareness among doctors and expand access to high-tech diagnostics.
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It is critically important to develop neonatal screening programs that allow treatment to begin at early stages.
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Uzbekistan is working on creating inexpensive immunological tests for the early diagnosis of primary immunodeficiencies.
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International scientific cooperation is the key to progress in the field of orphan diseases.
Follow our updates - in the coming days we will publish the main speeches and conference materials!
