FTD Disorders Registry Project Manager - Genetic Counseling & Testing

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.

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

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.

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.

Special Knowledge/Skills

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.

Familiarity with database/CRM software (Salesforce), survey software (SurveyGizmo), and Zoom/Zoom Webinar desirable.

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

ADDITIONAL INFORMATION

Interview Process

Submit an application, including cover letter and resume

Phone screen with a member of AFTD’s HR department

Interview with Hiring Manager

Team interview with department staff

Offer made to final candidate (contingent on reference and background checks)

Additional interviews or assessments may be required depending on position

AFTD Awards

Platinum Seal of Transparency for 2026 from Candid, an organization that collects and publishes IRS-verified data about charitable organizations, issuing Seals of Transparency based on how much information each charity provides

4-star rating on Charity Navigator, an organization that assesses nonprofits’ organizational effectiveness through IRS filings and metrics such as, Impact & Results, Accountability & Finance, Culture & Community, and Leadership & Adaptability

Benefits and Perks

AFTD offers a competitive salary and is committed to providing a comprehensive benefits package to meet the needs of our employees and their families, including:

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

AFTD participates in E-Verify. Learn more about applicant rights under Federal Employment Laws.