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
Tuesday, 27 April
- 17:20 - 18:50
- Orphan Diseases: How to Ensure Access to Innovative Drugs for Patients With Rare Diseases?