News - February 23, 2022
EUCOPE’s Alexander Natz discusses the need for a holistic, integrated, and well-functioning EU environment to foster innovation and re-invest in R&D during the EURONEWS Debates. Rare diseases pose a significant challenge to the European health institutions. Due to the relative irregularity that people suffer from… read more
EUCOPE Resources / Events & Meetings / News - October 18, 2021
EUCOPE, in partnership with Sanofi, participated in the European Health Forum Gastein 2021 (EHFG) on 29 September in a session on rare diseases to discuss what is needed to stimulate basic research, clinical development, and access to care across the EU in light of the… read more
EUCOPE Resources / News / Press Releases - July 29, 2021
The European Commission is consulting stakeholders as part of its revision process of two major pieces of legislation, on medicines for rare diseases and paediatric patients. Central to the development of innovative treatments for these specific categories of patients, this revision process represents an important… read more
EUCOPE Resources - July 8, 2021
The complexities related to delivering some Advanced Therapy Medicinal Products (ATMPs) most likely will require highly specialized clinical expertise and infrastructures, which currently do not exist in all EU counties. Therefore, relocating or crossing borders often represent the only solution for many patients. A well-developed… read more
News / Press Releases - June 11, 2021
The multidisciplinary European Expert Group on Orphan Drug Incentives (OD Expert Group) has developed fourteen innovative proposals along the entire lifecycle of orphan drug development to address the unmet needs in rare diseases. With over ninety percent of patients without a centrally approved treatment option,… read more
News - April 26, 2021
On 7 May, the European Commission opened its public consultation on the revision of EU rules on medicines for children and rare diseases. The consultation, aimed at stakeholders and members of the general public, including patients and doctors, will explore several options to address the shortcomings… read more
Partnerships - March 25, 2021
Working group of European rare disease experts developed nine principles to foster greater consistency in Value Assessment and Funding Process in rare diseases. The group explored the pricing and reimbursement systems for OMPs in selected European countries to analyse where they align with or diverge from… read more
Partnerships - March 25, 2021
Multi-stakeholder initiative commissioned by the Belgian National Institute of Health and Disability Insurance (INAMI-RIZIV) aimed at fostering stakeholders’ agreement of what real-world data (RWD) can be collected for highly innovative technologies, to generate real-world evidence (RWE) that informs decisions by healthcare systems, clinicians and patients…. read more
Partnerships - March 25, 2021
Multidisciplinary expert group including researchers, academia, patient representatives, investors and industry Input to strengthen the OMP Incentives Environment in Europe focusing on addressing unmet needs and supporting delivery of continued innovation where treatments exist; finding ways to optimise and accelerate OD regulatory pathways and identifying… read more
Events & Meetings / News - February 9, 2021
EUCOPE has the pleasure to participate to the 1st International Conference on Rare Diseases organised under the patronage of H.E. the President of the Hellenic Republic. The event, entitled “Building a Pathway from Diagnosis to Access” will take place virtually on the first and second… read more
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