Rare Disease Hub
Read here all the latest news regarding our activities on rare diseases, orphan medicinal products and the rare diseases community. For more information on our work on rare diseases, please contact Vittoria Carraro.
- EUCOPE Resources
- Events & Meetings
- Job Posting
- Member Spotlight
- Partnerships
- Partnerships in Focus
- Press Releases
EUCOPE Resources
October 17, 2022
Event Recap – Alexion’s Rare Disease Policies (13 October 2022)
October 3, 2022
Event Report: The revision of the EU legal framework for orphan drugs and its impact on Germany
June 7, 2022
🎙️Sounds of Science – Episode 6 on Cross-Border Healthcare
October 18, 2021
Event report: European Health Forum Gastein: A better tomorrow for rare disease care and research
September 17, 2021
Event report: EUCOPE/IML roundtable ‘Revision of the European Orphan & Paediatric Regulation and impact for the Nordic rare disease community’
July 29, 2021
Response to the OMP & Paediatric Consultation- A Call for a Constructive Conversation
July 28, 2021
The Paediatric Regulation: Our Proposals
July 28, 2021
The Orphan Medicines Regulation: Our Proposals
July 8, 2021
Cross-border healthcare for ATMPs patients: Our Solutions
January 7, 2021
EUCOPE’s response to the Orphan Medicinal Products and Paediatrics Inception Impact Assessment
December 1, 2020
The OMP Regulation in context: EU environment for the development of OMPs
November 25, 2020
EC Pharmaceutical Strategy – Time for a Modern Approach to Value
May 15, 2020
A 20th Anniversary Analysis of the EU OMP Regulation
April 6, 2020
Study: Economic & Financial Challenges of Developing Orphan Drugs
Events & Meetings
October 17, 2022
Event Recap – Alexion’s Rare Disease Policies (13 October 2022)
October 3, 2022
Event Report: The revision of the EU legal framework for orphan drugs and its impact on Germany
June 24, 2022
Event Recap: ‘The Future of Rare Diseases in Europe & Czech Republic’ Webinar
October 18, 2021
Event report: European Health Forum Gastein: A better tomorrow for rare disease care and research
September 17, 2021
Event report: EUCOPE/IML roundtable ‘Revision of the European Orphan & Paediatric Regulation and impact for the Nordic rare disease community’
July 28, 2021
Event Report: EUCOPE/FranceBiotech roundtable ‘OMP Regulation Revision, perspectives of the French rare disease community’
February 9, 2021
1st International Conference on Rare Diseases
December 2, 2020
Event Report: Case studies on rare disease therapies development
November 27, 2020
EMA Workshop on support for orphan medicines development
July 8, 2020
Event Report: What does it take for Europe to stay at the forefront of rare diseases innovation?
May 7, 2019
EC Conference: “Medicines for Rare Diseases & Children: Learning from the Past, Looking to the Future”
Member Spotlight
September 26, 2022
EUCOPE Member Spotlight: Q&A with AOP Health
May 30, 2022
EUCOPE Member Spotlight: Q&A with CSL Behring
Partnerships
March 29, 2022
OD Expert Group kicks off Phase 2
March 25, 2021
OrphVal
March 25, 2021
RWE4Decisions
March 25, 2021
European Expert Group on OD Incentives
Partnerships in Focus
May 30, 2022
Partnerships in Focus: Q&A with Alexion-AstraZeneca’s Maciej Gajewski
May 3, 2022
Partnerships in Focus: Q&A with Takeda’s Toon Digneffe
Press Releases
July 29, 2021
Response to the OMP & Paediatric Consultation- A Call for a Constructive Conversation
June 11, 2021
OD Expert Group unveils Policy Proposals to address Unmet Needs in Rare Diseases
January 7, 2021
EUCOPE’s response to the Orphan Medicinal Products and Paediatrics Inception Impact Assessment
November 25, 2020
EC Pharmaceutical Strategy – Time for a Modern Approach to Value
August 11, 2020
Evaluation of EU legislation on Orphan Medicinal Products (OMPs) and Paediatric Medicines
August 11, 2020
Press Release: Study on Orphan Regulation
July 7, 2020
EUCOPE response to the EC Pharmaceutical Strategy Roadmap
March 10, 2020