Yesterday, patients and members of the rare disease community joined iBIO and our members in Springfield to discuss the challenges rare disease patients face in Illinois. Attendees learned from Dr. VK Gadi about the importance of diversity in Clinical Trials and how the UI Cancer Center is improving representation.
Lieutenant Governor Juliana Stratton joined us for a discussion led by TaLana Hughes, Executive Director of the Sickle Cell Disease Association of Illinois, and other Sickle Cell patients about their challenges with care and daily life living with their disease.
We ended the day with a conversation with Michael Heifetz about the Campaign for Transformative Therapies on cell and gene therapies and what we need to do in Illinois with our Medicaid program to ensure patients can access these life-changing therapies.
Thank you to the patients for coming and sharing their experiences and to iBIO’s partners for making the program possible: Astellas, BIO, Horizon Therapeutics, Genentech, Vertex and BioMarin.