WORLD ORPHAN DRUG CONGRESS USA WEBINARS

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Understanding the Novel Challenges in Rare Disease Clinical Development: Perspectives from Experts

Tuesday, September, 22, 2020 - 11am ET / 8am PT

Rare disease clinical trials face challenges including lack of diversity, small populations, and limited understanding of each disease. These challenges are further compounded by geographic dispersion of patients, clinicians and investigators, a multitude of regulatory uncertainties, and the challenges in designing studies for effective execution. Join our panel of experts who will discuss these challenges and more.

 

Sponsored By:

Medidata logo

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The Role of Managed Access in Rare Disease and What We Can Learn from COVID-19

Aired Wednesday July 1, 2020

With clinical trials on hold and other considerations of a global pandemic, how can companies use managed access programs to serve their rare disease patient communities and provide access to treatments during COVID-19 and beyond? Also, how can real-world evidence be generated during a managed access program to better understand unmet medical need, and aid in future regulatory approvals?

 

Sponsored By:

PRA Health Sciences logo

Rare Disease Clinical Development: The Future is Here

Aired Wednesday June 3, 2020

Rare disease patients face many challenges when participating in a clinical trial. Historically, clinical trials have been designed without the consideration of patients, resulting in a research paradigm that is archaic and outdated. By adopting a patient-focused mindset we can reduce the burden of clinical trial participation by designing clinical trials that are more feasible and realistic for patients.

 

Sponsored By:

PRA Health Sciences logo

Fruit Baskets, Faces, and Icebergs:  Estimating Rare Disease Market Size with Machine Learning

Aired Tuesday May 5, 2020

Launching an Orphan Drug without an approved treatment? Need to estimate a forecast without really knowing the true prevalence? Does the lack of an ICD-10 code for the disease make all of the above even more complicated? Join us as we demonstrate cutting-edge methodologies via analogies and case studies that address the above conundrums common to our community!

 

Sponsored By:

 

Rare disease community response to COVID-19: Patient group and industry perspectives

Aired Wednesday April 22, 2020

There are many unprecedented challenges facing the rare disease community due to COVID-19 — maintaining patient access to rare disease therapies, managing delays in clinical trials, and ensuring patient support are all top of mind. Our panel of experts discussed how the rare disease community is addressing these challenges.

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If you would like to be a speaker or sponsor of our webinar series,  contact Justin Franks at  justin.franks@terrapinn.com to secure your place.

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