Registry Program Manager

• Oversee day-to-day operations of the BetterLife FSHD patient registry, including user experience, communications, and data management.
• Manage participant support, data quality, and program coordination for research projects.
• Collaborate with internal teams and external stakeholders to align registry operations with research and patient engagement goals.

This role directly supports the FSHD community by managing a patient registry that accelerates research and treatment development for facioscapulohumeral muscular dystrophy, improving the lives of those affected.

• At least 3 years of experience in registry, clinical research, or related role.
• Excellent communication, project management, and attention to detail.
• Proficiency in MS Office (Word, Excel, PowerPoint).
• Knowledge of human subject protections and database systems preferred.

Compensation and perks not specified. The FSHD Society is an equal opportunity employer.

The FSHD Society is a nonprofit dedicated to accelerating treatments and a cure for facioscapulohumeral muscular dystrophy (FSHD) through collaboration, advocacy, education, and research.