FTD Disorders Registry Project Manager - Genetic Counseling & Testing Program (49142)

Are you looking to make a difference in the world? 

Looking to take the next step in your career with an impactful organization helping people?

Join The FTD Disorders Registry (The Registry), LLC, a non-profit entity working to accelerate the science towards treatments and cures for the most common cause of dementia under 60, known as FTD, and including diagnoses of behavioral variant FTD, primary progressive aphasias, FTD-ALS, corticobasal syndrome, and progressive supranuclear palsy. We advance research by providing tools and resources to help people learn about research opportunities, to collect and share data to advance the science, and to amplify the voice of the patients’ and families’ lived experience. All Registry staff are hired as employees and team members of The Association for Frontotemporal Degeneration (AFTD), an affiliated non-profit that co-founded and manages the Registry as an LLC. AFTD is the leading organization dedicated to ending FTD. We help families affected today, and drive research to bring hope for the future. 

Job Summary

The Genetic Counseling & Testing Program Project Manager will serve as the operational lead for all registry-based components of a genetic counseling and testing program. This role ensures a seamless participant experience; manages coordination between genetic counseling providers, testing laboratories, sponsors, and registry operations; and supports program governance, education, marketing, and data management-based components of the program. 

This position is ideal for a genetic counseling assistant, project manager, or early career genetics professional who excels at cross functional work, project execution, and patient facing communication.

This is a remote-based position; King of Prussia, PA area candidates preferred.

FUNCTIONAL RESPONSIBILITIES 

Essential Job Functions

The Project Manager will oversee the operational execution of the Registry’s Genetic Counseling & Testing Program, ensuring smooth coordination across genetic counseling, laboratory, and participant support workflows. They will collaborate with genetic testing laboratories, counseling providers, and internal stakeholders to implement program processes, develop and refine SOPs, and maintain high-quality participant experiences. The Project Manager will directly interact with participants to field questions regarding testing logistics, privacy, and available services. They will manage project timelines, monitor risks, and track key performance indicators to guide continuous program improvement. In close partnership with the Registry’s IT platform vendor, the Project Manager will define requirements, oversee the development of new platform components, and ensure the successful technical build of tools needed to deliver and track the genetic testing program. Additionally, they will support data accuracy and reporting and collaborate with communications staff to produce educational and outreach materials that enhance program awareness and participant engagement and support workflows. 

Organize and lead coordination for Registry operations for the Genetic Counseling & Testing Program.

• Coordinate day-to-day operational workflows across genetic counseling providers, testing laboratories, the platform vendor, and Registry staff.
• Serve as the primary point of contact for internal and external partners to ensure smooth program execution. 
• Oversee participant intake workflows, including eligibility screening, referral routing, and documentation tracking.
• Manage communication channels to support timely updates between counselors, labs, sponsors, and Registry leadership.
• Lead coordination of data flow processes, ensuring accurate and timely transfer of genetic testing and counseling data into Registry systems.
• Work closely with the Registry’s IT platform vendor to define requirements, prioritize features, and support the development and deployment of platform components needed for program delivery.
• Maintain and update standard operating procedures (SOPs) for all Registry related genetic counseling & testing program activities.
• Monitor operational bottlenecks, escalate issues appropriately, and drive improvements to enhance participant and partner experience.
• Support the planning and execution of internal program meetings, stakeholder check-ins, and operational reviews

Organize programs and initiatives to support the missions, goals, and objectives of the Registry.

• Develop and implement program plans that align with the Registry’s strategic priorities and support expansion of genetic counseling and testing access.
• Coordinate cross functional initiatives that strengthen patient engagement, data quality, and research readiness across the Registry
• Collaborate with internal teams and external partners to design tools, workflows, and educational materials that advance Registry objectives.
• Identify opportunities to enhance program impact through improved processes, new partnerships, or expanded service offerings.
• Lead efforts to ensure all program activities comply with Registry policies, privacy standards, and governance requirements.
• Support the development of reports, metrics, and presentations that demonstrate program value to stakeholders and sponsors.
• Facilitate continuous improvement by monitoring program performance, gathering feedback, and implementing refinements.

Other Job Functions

• Cross-train with other Registry roles to ensure adequate coverage, operational resilience, and shared understanding of core Registry functions.
• Develop and maintain feedback loops with participants, partners, and internal staff to identify areas for program enhancement and improve user experience.
• Support continuous quality improvement initiatives through monitoring, documentation, and refinement of operational workflows.
• Assist with onboarding and training of new team members or contractors involved in program workflows.
• Participate in Registry-wide meetings, planning sessions, and collaborative projects that further organizational goals.
• Contribute to the development of educational materials, FAQs, and internal guides to support consistent program execution.
• Provide general administrative and coordination support as needed to ensure smooth functioning of Registry operations
• In collaboration with project partners and Registry staff, address any issues with the platform or project plans promptly.
• In collaboration with the Registry staff, develop and implement strategies to improve participant engagement from all sectors of society affected by FTD.
• Identify and use appropriate metrics and KPIs to effectively track project/program success
• Produce complete, accurate, and timely reporting of program and project statuses throughout their life cycles
• Ability to travel periodically such as to the home office in King of Prussia for biannual staff meetings and to 2-4 conferences or educational meetings per year. 

SUPERVISORY RESPONSIBILITIES

• This position is an individual contributor and does not have direct supervisory responsibilities.