News
On 26 April 2023, the Europe Commission published the EU Pharmaceutical Package proposal, revising the OMP Regulation as part of the revision of the EU pharmaceutical legislation. The revision aims to improve the existing legal framework to ensure access to affordable medicines in the EU, foster innovation in areas of unmet medical need, and enhance supply security […]
Posted on 11. May 2023
News
On June 21, the multi-stakeholder OD Expert Group held its second online workshop. We are grateful to all the participating experts for their valuable contributions that made the workshop a great success. The workshop allowed for productive discussions on best practices and innovative solutions regarding access to orphan medicinal products for individuals affected by rare […]
Posted on 25. June 2024
News
Yesterday, 13 May 2024, the multi-stakeholder OD Expert Group officially launched its Phase 3 during an online workshop. Thanks to all the experts who joined and contributed to making the workshop a great success. The workshop allowed for fruitful discussion to take place on principles and best practices related to access to orphan medicinal products […]
Posted on 14. May 2024
Resources
Today, rare disease patients across EU member states experience delayed or lack of access to approved Orphan Medicinal Products (OMPs). On June 29, during our event, the OD Expert Group officially launched its reports on HTA. Through a series of workshops, consultations, and as a result of a collaborative effort, the OD Expert Group has […]
Posted on 10. July 2023
News
On June 29, the OD Expert Group hosted the first signature event to discuss the upcoming Pharma revision and an EU HTA fit for rare diseases. Thanks to all of you who joined us in Brussels or online, and to all the panelists who contributed greatly to making this event a success. Throughout the event, […]
Posted on 5. July 2023
Events
June 29, 2023 10:00 am
SAVE THE DATE – 29 JUNE Join us for an event that brings together a diverse group of rare disease experts to discuss and propose policy recommendations for improving the European legislative framework and HTA for orphan drugs. With a focus on collaboration and consensus-building, this event is meant to create a meaningful dialogue and […]
Posted on 30. May 2023
