OD Expert Group

OD Expert Group

Hospitals and Health Care

The European Expert Group on Orphan Drug Incentives brings together representatives of the broad rare diseases community

About us

The multidisciplinary and cross-functional OD Expert Group brings together representatives of the broad rare disease community, including researchers, academia, patient representatives, members of the investor community, rare disease companies and trade associations. Our initiative is led by a steering group composed of EURORDIS, The Voice of Rare Disease Patients in Europe, and the European Confederation of Pharmaceutical Entrepreneurs (EUCOPE) representing companies focused on finding new therapies for rare disease. This Group aims to become the source of ground-breaking ideas and potential solutions that will provide input to the Orphan Medicinal Products (OMP) Regulation. The experts have worked together since 2020 and developed policy proposals throughout the entire OMP lifecycle: We are committed to three areas: research and development in therapeutic areas with currently no treatment or whose treatment needs improvement; regulatory pathways for orphan drugs; access.

Industry
Hospitals and Health Care
Company size
11-50 employees
Headquarters
Brussels
Type
Nonprofit
Founded
2020

Locations

Employees at OD Expert Group

Updates

  • View organization page for OD Expert Group, graphic

    243 followers

    🎉We at the OD Expert Group are happy to welcome all the newly elected MEPs following the European Parliament elections and are glad to see some #healthcare champions confirmed. Your guidance and insights are fundamental as we adapt to the evolving healthcare environment in the #EU.   🇪🇺 As you embark on this important journey, we urge the Parliament to continue prioritising health policies, with a particular focus on #RareDiseases. In Europe, over 30 million people live with a rare disease, often facing significant challenges in accessing timely #diagnosis, appropriate #treatments, and adequate care.   Together, we can make a significant impact and pave the way for a more inclusive and future-oriented Europe. We look forward to collaborating with the new Parliament and sharing with policymakers our ideas! EUCOPE - European Confederation of Pharmaceutical Entrepreneurs EURORDIS-Rare Diseases Europe

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  • View organization page for OD Expert Group, graphic

    243 followers

    We are excited to introduce you to the new members of the OD Expert Group. These talented professionals will contribute to the work of the OD Expert Group with their qualified experience and unique perspectives. We look forward to collaborating with them in our work for better understanding and addressing the specific challenges faced by individuals affected by rare diseases. Thank you all for joining us! EUCOPE - European Confederation of Pharmaceutical Entrepreneurs EURORDIS-Rare Diseases Europe Maurizio Scarpa

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  • View organization page for OD Expert Group, graphic

    243 followers

    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 diseases. The members of the OD Expert Group shared informative comments and insightful ideas concerning the future of access within the European Union. 🧠Building on the insights provided during the OD Expert Group's first workshop, which focused on the best practices in treatment access to OMPs, the second workshop delved into the EU’s efforts to encourage the adoption of these best practices among Member States. As always, the multi-stakeholder nature of the Group and the outstanding expertise of its members translated into a high-level and inspiring debate. 🔍Experts engaged in Focus Group Discussions deliberated on three key questions: ·       How can the EU foster harmonization and adoption of EAPs? ·       What is needed for Member States to consider RWE in their decision-making? ·       Should the EU do more to address the ability to pay? The conclusions drawn by the OD Expert Group members during this second workshop, combined with the results of the first workshop, are the core of phase 3 of the OD Expert Group’s work dedicated to the issue of access to OMPs in the EU. We will continue working and developing ideas for our next Report, stay with us on this journey. EUCOPE - European Confederation of Pharmaceutical Entrepreneurs EURORDIS-Rare Diseases Europe

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  • View organization page for OD Expert Group, graphic

    243 followers

    Yesterday, the OD Expert Group hosted its first workshop in phase 3 of its work on Access. 💡 The workshop provided the opportunity to discuss the issues surrounding access to rare diseases treatments in the EU with the OD Expert Group members. 🔎 The third phase of the work of the OD Expert Group is dedicated to its work on the issue of access to OMPs in the EU, a timely and significant political debate. Throughout the third phase, the OD Expert Group is committed to developing policy proposals on OMP accessibility, building on existing tools and exploring new pathways. We look forward to displaying the results OD Expert Group Phase 3 and continuing the discussion on the current state of rare disease treatments and potential solutions! 🔗 Read our press release: https://lnkd.in/gxrVkbm5 #RareDiseases #ODExpertGroup #EUHealthcare

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