The consortium is starting to form working groups

We are pleased to announce that the consortium has begun the process of forming working groups in key areas. We would like to thank our colleagues for their initiative and suggestions, which became the basis for creating these groups.

The following areas are currently proposed:

1. Digital technologies in diagnostics and treatment of rare diseases
   Head: Evgeniya Valerievna Nazarova, National Association of Experts on Rare Diseases (NAEREZ, Russia).
2. Assessment of medical technologies/Provision of drugs with orphan drugs
   Head: Nuria Zagitovna Musina, National Association of Experts on Rare Diseases (NAEREZ, Russia).
3. Clinical guidelines for the treatment of rare diseases
   Head: Vlada Konstantinovna Fedyaeva, Institute of Translational Medicine and Biotechnology, Sechenov University (Russia).
4. Collection, analysis and use of real clinical practice data in the treatment of rare diseases
   Head: Alexey Sergeevich Kolbin, Association of Specialists in Health Technology Assessment (Russia).
5. Patient organizations
   Head: Yuriy Aleksandrovich Zhulev, All-Russian Union of Public Associations of Patients.
6. Charity foundations
   Head: Bakhyt Madeniyetovna Baigaliyeva, Association for Assistance to Patients with Orphan Diseases in the Republic of Kazakhstan.
7. Congenital metabolic disorders, amino acid metabolism disorders (aminoacidopathies, phenylketonuria)
   Head: Antonina Alikovna Pak, National Children's Medical Center (Republic of Uzbekistan).
8. Pediatric neurooncology
   Head: Lyudmila Ivanovna Papusha, Dmitry Rogachev National Medical Research Center for Pediatric Hematology and Oncology (Russia).

We invite representatives of the consortium member organizations to join the work in these groups. To be included in the working group, please send applications to the email address of Yulia Stuk, secretary of the consortium: y.stuk@naerez.ru.