Note: The job is a remote job and is open to candidates in USA. The Association for Frontotemporal Degeneration (AFTD) is a non-profit organization dedicated to ending frontotemporal degeneration (FTD). They are seeking a Genetic Counseling & Testing Program Project Manager to lead operational components of the program, ensuring a seamless participant experience and coordinating between various stakeholders.
Responsibilities
- 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
- 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
- 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
- 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
Skills
- Bachelor's degree in genetics, biology, neuroscience, health sciences, or related field required
- Experience supporting genetic counseling, clinical research, patient navigation, or precision medicine programs
- Prior work involving coordination of multistakeholder projects, clinical workflows, or registry-based initiatives
- Experience collaborating with IT teams or platform vendors to support requirement gathering, feature development, or system testing
- Experience with patient-facing communication, particularly in sensitive or high-needs health contexts
- Exceptional skills in communication and collaboration
- Strong written and oral communication skills
- Ability to take initiative to complete project deliverables and work independently towards overall project goals
- Demonstrated ability to collaborate on multiple concurrent projects with dynamically changing priorities
- Proficiency in Microsoft® Office Suite, as well as use/learn new web-based applications
- Project Management Professional (PMP) or equivalent certification or certification eligibility desirable
- Familiarity with neurodegenerative disease populations, rare disease registries, or genetic testing logistics is preferred
- Experience with online project management applications (Monday.com, Smartsheet, MS Project, Teams Planner) desirable
- Familiarity with database/CRM software (Salesforce), survey software (SurveyGizmo), and Zoom/Zoom Webinar desirable
Benefits
- Medical, Dental and Vision insurance for eligible employees regularly working 30 hours or more per week – presently AFTD covers 100% of employee individual medical coverage
- Employer paid Basic Life Insurance/AD&D
- Employer paid short-term and long-term disability insurance
- Identity Protection
- Voluntary Term Life/AD&D
- Hospital Indemnity, Accident, and Critical Illness insurance
- Pet discount program
- Employee Assistance Program
- SIMPLE IRA with company match
- Generous paid vacation and sick time
- 14 paid holidays
- 4 weeks paid parental leave
- A company culture that encourages work/life balance
- Ongoing team building opportunities, including staff retreats and days of service
- Ongoing professional development training and opportunities
- Hybrid working environment, with the opportunity to work remotely up to 3 days per week
- Business casual dress code
Company Overview