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admedicum and RareUrn webinar on registries
Successful industry strategies for implementing Federated European Registries
Joint admedicum / RareUrn webinar on patient engagement and registry planning

Successful industry strategies for implementing Federated European Registries

8 October 2019 at 14.00 GMT (London), 15.00 CEST (Paris), 9.00 EST (New York City)

We will explore how the industry can engage with patients to support the formation of strong patient organizations and how that step is important. Organized patients and families enable patient engagement to be formal, sustained, and evolving towards a real long-term partnership in the creation of federate patient registries. Finally, we will outline effective strategies for industry collaboration with the European Reference Network (ERN) registries funded by the European Commission under HP-PJ-2019.

We very much hope that you will be able to join us for the first webinar in a series on patient engagement that admedicum is hosting in Autumn 2019.

Speakers include:
• Liam Galvin Secretary, European Idiopathic Pulmonary Fibrosis Federation (EU-IPPF) and Director, Irish Lung Fibrosis Association
Introduction and EU IPPF's experience with registries for Pulmonary FIbrosis

• Dr. Andreas Reimann, Founder and Managing Partner, admedicum
How to engage patients and build strong, international patient communities

• George Reynolds, Advisor in Rare Diseases registries, RareURN
Industry strategies for planning European Registries, and RWD Study platforms

George will highlight the role of technology and how a Patient Registry with federated structure can provide data access to multiple stakeholders while keeping up to data protection and compliance gold standards.

First webinar in admedicum's Autumn webinar series
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