Rare Disease Hub
EUCOPE works to strengthen the whole EU environment for the development of rare disease treatments.
With almost half of our members involved in the research and development of therapies for rare diseases, EUCOPE offers an opportunity for members to discuss the latest rare disease and orphan medicinal products‘ national and European legislative and policy developments without neglecting relevant global or international developments (North America & Asia). Wider membership can provide feedback and contribute to EUCOPE’s engagement on the OMP Regulation and validate the Incentives Steering Group’s approach.
Read below 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 Victor Maertens.
- EUCOPE Resources
- Events & Meetings
- Job Posting
- Member Spotlight
- Partnerships
- Partnerships in Focus
- Press Releases
EUCOPE Resources
February 22, 2023
🎙️Sounds of Science #13 on Rare Disease Day 2023
December 21, 2022
🎙️Sounds of Science Episode 11 – 2022 Year in Review
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
July 29, 2021
Response to the OMP & Paediatric Consultation- A Call for a Constructive Conversation
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
February 20, 2023
Launch of the Nordic Rare Disease Summit 2023
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
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
March 31, 2023
EUCOPE Member Spotlight: Q&A with Avanzanite Bioscience
February 22, 2023
EUCOPE Member Spotlight: Q&A with BioCryst
January 25, 2023
EUCOPE Member Spotlight: Q&A with Sobi – Swedish Orphan Biovitrum
September 26, 2022
EUCOPE Member Spotlight: Q&A with AOP Health
May 30, 2022
EUCOPE Member Spotlight: Q&A with CSL Behring
Partnerships
December 8, 2022
‘Rare Disease Moonshot’ – Scaling-up public-private partnerships to accelerate research into world’s rarest diseases
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
February 20, 2023
Launch of the Nordic Rare Disease Summit 2023
January 3, 2023
Three new Associate Members join in 2023
December 8, 2022
‘Rare Disease Moonshot’ – Scaling-up public-private partnerships to accelerate research into world’s rarest diseases
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