Illinois Rare Disease Day Highlights – Springfield
Grateful to stand alongside fellow advocates, patients, caregivers, clinicians, and policymakers in Springfield to recognize Illinois Rare Disease Day and elevate the voices of the more than 1 in 10 Americans living with a rare disease.
Through the leadership of PBC Awareness, NFP, we proudly joined partners from across the state to raise awareness about Primary Biliary Cholangitis (PBC) and thousands of other rare conditions that often go unseen, undiagnosed, and under-resourced.
Rare Disease Day is more than a moment — it is a movement. Together, we will continue to advocate for policies, funding, and awareness that ensure no patient feels invisible or alone.
Highlights from the day included:
- Meaningful conversations with state leaders about advancing health equity and improving access to specialty care
- Sharing patient stories that underscore the urgency for research, early diagnosis, and coordinated support services
- Strengthening partnerships with advocacy organizations committed to improving outcomes for rare disease communities
- Celebrating official recognition that brings visibility and hope to patients and families across Illinois
