Orphan Diseases: How to Ensure Access to Innovative Drugs for Patients With Rare Diseases?

  • The need to improve legal framework: what initiatives must be taken to provide more effective care for orphan patients?
  • Creating registers of orphan diseases and prospects for their expansion
  • The need to develop a register of patients with orphan diseases. Difficulties in collecting information
  • Financing the procurement of medicines for orphan patients at national and regional level. Prospects for transferring the procurement of orphan drugs from regional to the State level
  • Creation of a state fund to help children with orphan diseases “Circle of Kindness”: a list of included diseases and drugs, estimated funding
  • Efforts required to build communication and interaction between different groups of stakeholders to solve the problems of orphan patients
  • Innovative therapy for the treatment of patients with orphan diseases and its access to the Russian market
  • Conditions for the import of medicines for treatment of orphan diseases that are not registered in Russia

 

Evgeniya Birkaya

Natalia Bessonova

Anton Prozumentov

Vladimir Bulatov

Alisa Dzhangiryants

Elena Khvostikova

Elena Litvinova

Olga Germanenko

Anastasiya Tatarnikova

Hourly Schedule

Tuesday, 27 April

17:20 - 18:50
Orphan Diseases: How to Ensure Access to Innovative Drugs for Patients With Rare Diseases?

Date

27 Apr 2021
Expired!

Time

Moscow time
17:20 - 18:50
Online Platform

Location

Online Platform

Organizer

Advantix Pharma
Phone
+442080892886
Email
pharma@advantix.co.uk
Website
https://pharma.advantix.online/en/