In this special podcast episode in honor of Rare Disease Day 2024, Angela Wheeler, President of Insight US at Lumanity and Dr. Karin Hoelzer, Director of Policy and Regulatory Affairs at the National Organization for Rare Disorders (NORD), discuss opportunities for pharmaceutical companies to work with and support rare disease communities.
Learn how NORD is strengthening collaboration between pharmaceutical companies and rare disease communities, and examples of the positive impact that can be made when pharmaceutical companies, organizations like NORD, and patient advocates join together.
Listen to the full episode to hear Angela ask Karin some important questions, including:
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- What are the biggest opportunities for the rare disease communities in 2024?
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- What are some lessons learned for fruitful collaboration between pharma companies and rare disease communities and organizations like NORD?
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- What policy priorities is NORD focused on in 2024?
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- What are the ways to get the pediatric voice included the clinical development process earlier on?
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- What role can patient advocates and pharma play in supporting the rare disease community on these issues?
Many of our pediatric patients are the most effective advocates. We are finding that often times, growing up, these kiddos are the only ones that they know affected by their disease, and that can be really isolating.’
Karin Hoelzer
Contact us with any questions at contact@lumanity.com
Listen to the full podcast episode
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