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RARE REV-inar episode 001 part 3 – The role of real-world data collection in EAPs

In the rare disease space, why is real-world data capture from an EAP important? What is the potential value?

Early Access Programmes Communication strategies

A very warm welcome to our first in the series of RARE Rev-i-nars where today we will be talking all things EARLY ACCESS. I am Nicola Miller, Creative Director at RARE Revolution Magazine, and in the background working on the tech today, I am joined by my colleague Becky Pender. 

Today’s session which is in partnership with the TANNER PHARMA Group is a multi-stakeholder look at early access pathways. 

We are thrilled to have so many register for today and would encourage you to participate in the polls throughout the session, and please do drop any questions in the Q&A area and we will do our best to get to as many of them as we can at the end of the session. Any we don’t have time to get to we will endeavour to answer after the session closes and feed back to you all.

Today’s session will be also available to revisit on demand post event which we will circulate links to in due course.

I am delighted to be joined by very knowledgable and international line up today who can help guide us through the topic of early access.

John Lagus

Executive Vice President of Business Development @Tanner Pharma

David Caponera

Executive Director, Patient Advocacy @Novo Nordisk

Prof. ANIB Das

Head of Paediatric Metabolic Medicine @Department of Paediatrics, Hannover Medical School.

Dr. Femida Gwaadree-Shridhaar

Founder & CEO @Pulse Infoframe

Roberta Smith

President @Alagille Syndrome Alliance AND

Dawn Sullivan

Of Global Medical Affairs @Ultragenyx

Hello all and welcome

First, we are going to kick things off with a brief presentation from John on What is an early access programme or EAP and designing for the unmet needs.

John, may I pass to you?

RARE REV-inar episode 001 part 3 - The role of real-world data collection in EAPs and why is it important

https://youtu.be/JbjE09wW1aERare resource link https://rarerevolutionmagazine.com/rare_resources/rare-rev-inar-episode-001-part-3-the-role-of-real-world-data-collection-in-eaps

real-world data capture from an EAP

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