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+7 903 663-25-20
+7 926 840-02-03
117556, Moscow, Chongarsky Boulevard, 1/2, office 3/3
Musina Nuria Zagitovna, executive director
Stuk Yulia Alexandrovna, Secretary of the Consortium
CIS Consortium

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WHO has released guidelines on best practices for conducting clinical trials: what trials should look like today Published 05 December 2025 WHO has released guidelines on best practices for conducting clinical trials: what trials should look like today FDA approves first gene replacement therapy for SMA available to all ages Published 04 December 2025 FDA approves first gene replacement therapy for SMA available to all ages Uzbekistan: New state program to help children with orphan diseases for 2026–2030 Published 03 December 2025 Uzbekistan: New state program to help children with orphan diseases for 2026–2030 The CIS Orphan Consortium has a new member! Published 12 November 2025 The CIS Orphan Consortium has a new member!

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+7 903 663-25-20
+7 926 840-02-03
117556, Moscow, Chongarsky Boulevard, 1/2, office 3/3
Musina Nuria Zagitovna, executive director
Stuk Yulia Alexandrovna, Secretary of the Consortium
Полное наименование: Ассоциация «Национальная ассоциация экспертов по редким заболеваниям»
ОГРН: 1227700431551
ИНН: 9726017459
Адрес: 117556, Г.МОСКВА, ВН.ТЕР.Г. МУНИЦИПАЛЬНЫЙ ОКРУГ НАГОРНЫЙ, Б-Р ЧОНГАРСКИЙ, Д. 1, К. 2, ЭТАЖ/ПОМЕЩ. 1/61, КОМ./ОФИС 3/3
e-mail: y.stuk@naerez.ru

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