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

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. Remote‑based position; King of Prussia, PA area candidates preferred. Job location: Legal Address – King of Prussia, PA 19406. Position type: Full Time. Functional Responsibilities Oversee the operational execution of the registry’s Genetic Counseling & Testing Program, ensuring smooth coordination across counseling, laboratory, and participant support workflows. Collaborate with genetic testing laboratories, counseling providers, and internal stakeholders to implement program processes, develop and refine SOPs, and maintain high‑quality participant experiences. Directly interact with participants to field questions regarding testing logistics, privacy, and available services. Manage project timelines, monitor risks, and track key performance indicators to guide continuous program improvement. Define requirements with IT platform vendor, oversee development of new platform components, and ensure successful technical build of tools needed to deliver and track the genetic testing program. Support data accuracy and reporting, and collaborate with communications staff to produce educational and outreach materials that enhance program awareness and participant engagement. Organize and Lead Coordination 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. Maintain and update SOPs for all registry‑related genetic counseling & testing program activities. Monitor operational bottlenecks, elevate issues, 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 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. 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 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. Address any issues with the platform or project plans promptly. 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. Assist with periodic travel to the home office in King of Prussia for biannual staff meetings and 2‑4 conferences or educational meetings per year. Qualifications Education: Bachelor’s degree in genetics, biology, neuroscience, health sciences, or related field required. Licensure/Credentials: Project Management Professional (PMP) or equivalent certification, or certification eligibility desirable. Experience: Supporting genetic counseling, clinical research, patient navigation, or precision medicine programs. Coordination of multiparty projects, clinical workflows, or registry‑based initiatives. Collaboration with IT teams or platform vendors to support requirement gathering, feature development, or system testing. Patient‑facing communication, particularly in sensitive or high‑needs health contexts. Familiarity with neurodegenerative disease populations, rare disease registries, or genetic testing logistics preferred. Experience with online project management applications (Monday.com, Smartsheet, MS Project, Teams Planner) desirable. Special Knowledge/Skills: Exceptional communication and collaboration skills. Strong written and oral communication skills. Ability to take initiative and work independently toward overall project goals. Demonstrated ability to collaborate on multiple concurrent projects with dynamic priorities. Proficiency in Microsoft Office Suite and ability to learn new web‑based applications. Familiarity with database/CRM software (Salesforce), survey software (SurveyGizmo), and Zoom/Zoom Webinar desirable. Benefits and Perks Medical, Dental and Vision insurance for eligible employees. Employer paid Basic Life Insurance/AD&D, 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. Work‑life balance culture; ongoing team building opportunities, staff retreats, and days of service. Ongoing professional development training and opportunities. Hybrid working environment; opportunity to work remotely up to 3 days per week. Business casual dress code. Equal Opportunity Statement AFTD is committed to creating a diverse environment and is a proud equal opportunity employer. All qualified applicants will receive consideration for employment without regard to race, color, religion, gender, gender identity or expression, sexual orientation, national origin, genetics, disability, age, or veteran status. All your information will be kept confidential according to EEO guidelines. AFTD participates in E‑Verify. #J-18808-Ljbffr The Association For Frontotemporal Degeneration