RareUrn and our German Partner Amedicum, hosted a joint webinar On October 1st.
“Successful industry strategies to implementing European Registries, and RWD Study platforms”
This webinar focused on providing Pharma with practical advice arond setting up Federated Registries and RWD Platforms.
It was a great success with over 80 registrations
We were invited to exhibit at the RAREsummit19 on 23rd Sept 2019 at the Wellcome Genome Campus Cambridgeshire UK.
We will be attending EURORDIS ETRC Pharma workshop in Barcelona on October 15th. Please complete the contact form if you would like to meet at this important industry only event.
On the 23 July George Reynolds was invited by the Forum Group to present to an industry seminar in Bonn related to the new German G-BA regulations on registry requirements for Orphan Drug reimbursement.
On the 25th June George Reynolds was invited by EURORDIS as one of three panellists to present his views on rare disease registries and the opportunities for Research & Industry to collaborate in Rare Disease data collection. The webinar was a great success with over 200 registered attendees
On the 15th of May George was invited to present our Federated Registry strategy as a framework for cooperation with ERNS at the Pharma trade group EUCOPE Orphan Medicine working group meeting in Brussels
In November 2018 George Reynolds was invited to attend a policy meeting with several MEPs in the European Parliament: “A forward-looking agenda for rare diseases: bringing Europe closer to its people”
The highly respected European Respiratory Journal published a significant paper in 2019 where the leaders in the European Pulmonary Fibrosis research community have endorsed the Federated Registry as their chosen platform for collaborating amongst the numerous existing IPF registries in Europe and for establishing research partnerships with industry.
Here is the link to the article which George Reynolds co-authored. https://erj.ersjournals.com/content/53/5/1900539
