Conference on European Rare Disease Ecosystem: A Collaborative Path Forward

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EJP RD is co-organising the « Rare Conversations – European Rare Disease Ecosystem: A Collaborative Path Forward » conference in cooperation with Alexion, EURORDIS, EUCOPE, and EuropaBio. The conference is targeted towards representatives of the different communities active in rare diseases: patients, researchers, clinicians, regulators, investors, payers, and industry. The fully online conference will take place on November 9, 2021 from 14.00 – 18.00 CET.…

EHDEN 5th Open Call for Data Partners to map source data to OMOP common data model and collaborative research

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The EHDEN Consortium announces its 5th Open call targeted towards data custodians of Electronic Health Records, Claims, Hospital and Registry data across Europe, supporting the mapping of their data to the OMOP common data model to accelerate research and healthcare decision-making. The current open call will run from October 13th to November 15th. They welcome all applications, but applications from countries not yet (or minimally) represented…

EURORDIS announces 32nd Round Table of Companies Workshop

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EURORDIS Rare Diseases Europe is organising its 32nd Round Table of Companies (ERTC) workshop on the theme of « The impact of the EU regulatory network strategy 2020-2025 on the development of orphan medicines » aimed at bringing together participants spread across pharmaceutical, biotech and clinical research organisations (CRO), patient advocates, regulators, HTA bodies, healthcare professionals, researchers…

Presentation of EJPRD during IMPC 10th Anniversary Conference: Mouse Genetics and Genomic Medicine

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The International Mouse Phenotyping Consortium (IMPC) is organising a virtual conference titled « Mouse Genetics and Genomic Medicine » to celebrate the occasion of the 10th anniversary of the establishment of the IMPC. The fully virtual conference will take place over two days on September 23rd – 24th. On Day 1 of the conference (September 23rd from 17.35 to 18.00 CET), Dr. Daria…

RWE4Decisions Webinar: Delivering a Health Data Strategy for the European Reference Networks (ERNs)

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RWE4Decisions, a multi-stakeholder initiative commissioned by the Belgian National Institute of Health, is organising a webinar entitled “Delivering a Health Data Strategy for the European Reference Networks (ERNs): Developing a Shared Vision with All Stakeholders” to discuss what a co-created Health Data Strategy for the ERNs could look like. The webinar will take place on September 29, 2021 from 16.00…

ISPOR Webinar: Health Preference Research in the Context of Gene Therapy in Rare Diseases

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The Professional Society for Health Economics and Outcomes Research (ISPOR) is organising a webinar entitled “Health Preference Research in the Context of Gene Therapy in Rare Diseases” that will be limited to 1000 registered participants on a first-come, first-served basis. The webinar will take place on September 27, 2021 from 16.00 – 17.00 CET. This webinar will present the value…

Webinar: Leaving the darkness – tackling rare bone diseases

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Economist Events and Ipsen are organising a webinar entitled “Leaving the darkness: Tackling rare bone diseases” featuring the participation of clinical specialists, health policy experts and patient groups. The webinar will take place on September 22, 2021 from 17.00 – 18.00 CET. The webinar will discuss the complex context of rare bone diseases and how care can be re-oriented to…

EuropaBio Advanced Therapies webinar on EU case for equitable patient access to advanced therapies

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EuropaBio continues its Advanced Therapies webinar series of events, interviews, and publications with a virtual discussion on avenues for enhancing the access of EU patients to novel biotechnology-derived treatments titled “Treatment without borders: the EU case for equitable patient access to advanced therapies.” The webinar will take place on September 7, 2021 from 16.00 – 17.00 CET. The event will address whether EU…