James Griffin | Sickle Cell Advocate
Sickle Cell Patient Advocate
James Griffin was born in Milwaukee, Wisconsin and diagnosed with sickle cell disease at the age of two. Drawing on his personal journey as a patient, James brings a unique and deeply informed perspective to his advocacy work. He began championing sickle cell awareness in 2013 and has since become a leading voice in the movement. James continues to work on improving the quality of care for patients worldwide, focusing on eliminating the stigma and biases often associated with the disease. In addition, James has spoken at national conferences such as the Annual Sickle Cell Disease National Convention, Global Genes, and the National Organization for Rare Disorders. He has also delivered guest lectures at academic institutions like Harvard University, and the University of Notre Dame. James has partnered with biotech and pharmaceutical companies on their patient advisory boards. And he collaborated with non-profit organizations to develop educational resources for healthcare providers treating sickle cell disease. James is also a published author, best known for his powerful book Breaking Silence: Living With Sickle Cell Anemia. James says, "his ultimate goal is to see a universal cure for people living with sickle cell disease."
Appearances:
Day 1 - World Orphan Drug Congress USA 2026 @ 15:10
Sickle Cell Disease: The Past, Present & Future
In this presentation, you will gain a better understanding of what it is like for someone who lives with sickle cell disease, how their daily experiences are affected by their health, and why research and drug development are vital for promoting healthier living for people affected by this condition. This session will also examine key challenges faced by sickle cell patients navigating the rare disease landscape, including limited access to specialized care, stigma in healthcare settings, and insufficient research funding. The discussion will highlight why patient advocates should play a central role in decision making for promoting healthier living. Lastly, this session will provide stakeholders with valuable insights and practical strategies on ways they can support and advocate for improved access to treatments, care, and policies for people who live with sickle cell disease.
Objectives:
- Provide a firsthand perspective on sickle cell disease, review advocacy efforts past and present, and discuss the future of advanced therapies
- Provide strategies to stakeholders, ensuring that decisions reflect real-world needs and promote equitable access to care.
- Understanding the importance of connecting the patient advocate directly to industry can lead to meaningful changes in drug development and patient centered care
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