Legislative Briefing: Advancing Support for the Rare Skeletal Conditions Community

About the Briefing 

Join the Michigan Biosciences Legislative Caucus, MichBio, and partners to hear directly from patients and families impacted by rare skeletal conditions. This in-person session will highlight the critical programs and services in Michigan that support their health, dignity, and quality of life across all stages.

Highlights:

• Hear firsthand accounts from Michigan's patients and families affected by rare skeletal conditions
• Learn about the critical programs in Michigan that they rely on
• Engage in discussions about the importance of early intervention and comprehensive care

Speakers:

• Rep. Julie Rogers (D-41), Co-Chair, Biosciences Legislative Caucus
• Terri Klein, President & CEO, National MPS Society
• Dr. Berrin Ergun-Longmire, Professor of Pediatric and Adolescent Medicine, Western Michigan University, Homer Stryker M.D. School of Medicine
• Allison Graziano, Mom to Neal living with Costello Syndrome
• Gwyneth Drabek, Woman living with Achondroplasia, Graduate Student, Podcast Host and Advocate

Lunch: Provided at 11:30 AM

Questions? Please contact Stephen Rapundalo at stephen@michbio.org or (734) 476-0648