Patient advocacy with Stephanie E. Saville, Foundation Manager for the Pediatric Retinal Research Foundation
As the dedicated Foundation Manager for the Pediatric Retinal Research Foundation (PRRF), Stephanie Saville offers a unique and enlightening perspective into the specialized area of pediatric retinal research. The PRRF is a volunteer-driven organization that focuses on rare pediatric retinal diseases, offering support for children and adults who experience vision loss.Throughout our conversation, Stephanie emphasized the challenges rare diseases face and explored the complexities of rare disease research.
Stephanie believes in the importance of understanding the 'why' behind the diagnosis, and the power of patient stories in driving change. Stephanie offers insights on how organizations can work with advocacy groups like the PRRF to drive change together.
This is a must-listen episode for anyone interested in rare disease advocacy, and the power of patient stories.
Topics Discussed:
- An introduction to Stephanie Seville, the Foundation Manager for the Pediatric Retinal ResearchFoundation (PRRF), and an overview of the organization's focus on rare pediatric retinal diseases
- The volunteer-driven nature of the foundation
- Where Stephanie sees progress coming from and next steps in the journey
- The importance of the foundation’s biobank in understanding and finding the cause of rare pediatric diseases, and the challenges faced in this field such as funding and research complexity
- The intricacies of rare disease research, and the potential roles of pharma, biotech companies, and other organizations in supporting these initiatives
- The concept of "power to the patients" in the rare disease space, and the need for patients to be their own advocates and share their stories
- The importance of inclusivity and access in clinical trials, and how these can be ensured for patients with rare diseases
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