Director of Research

The Amyloidosis Research Consortium (ARC) is a 501c(3) nonprofit organization founded in 2015, harnessing the power of collaboration and innovation to advance science and both improve and extend the lives of those with Amyloidosis. We are dedicated to transforming the way research is being done and focus on what will have the most significant impact on improving the lives of amyloidosis patients. We forge collaborations across industry, research, clinical care, and regulatory to address unmet needs and accelerate the discovery of new treatments. ARC empowers and supports patients by ensuring they have access to the best quality care and information.

ARC seeks a full-time Director of Research to serve as both a scientific thought partner and operational leader of ARC’s research portfolio, shaping how programs are designed and ensuring they advance from concept to completion with rigor and impact, driving progress in the awareness, science, and treatment of amyloid diseases by partnering with patients and stakeholders across prioritized areas of research. Because ARC’s collaborators across academia, industry, and the clinical community generously contribute their time and expertise, the Director plays an active facilitation role, anticipating needs, removing barriers, and keeping collaborative work moving forward with creativity and initiative.

• →Serve as the operational leader of ARC’s research portfolio, coordinating and executing program activities across initiatives and ensuring alignment with departmental goals, budgets, and ARC’s broader mission and strategy.
• →Lead the design of research programs and projects, including defining research questions, study approaches, and success criteria, in collaboration with scientific advisors and external partners.
• →Drive the end-to-end execution of programs and partnerships from concept to completion, managing timelines, deliverables, success metrics, and resource plans in collaboration with ARC leadership and cross-functional teams.
• →Personally author and contribute to grant applications, research protocols, manuscripts, and reports.
• →Serve as a key member of ARC’s leadership team, contributing to organizational planning, strategic decision-making, and interdepartmental collaboration.
• →Build and maintain strong relationships with key stakeholders, including industry partners, donors, academic collaborators, clinicians, and patient advocates, to advance ARC’s mission.
• →Identify and pursue new opportunities for program growth, strategic partnerships, and funding that strengthen ARC’s sustainability and impact.
• →Develop and oversee department SOPs, workflows, and documentation systems to promote efficiency, transparency, and accountability across teams.
• →Lead by example, contributing directly to programs while mentoring team members and building their capacity.
• →Represent ARC as a subject matter expert and thought leader in external forums—including conferences, advisory panels, and public events—to elevate the organization’s visibility and influence.
• →Monitor department performance and impact through measurable outcomes; evaluate program effectiveness and adjust strategies based on data and feedback.
• →Manage up and across effectively by collaborating with ARC’s senior leadership and Board to frame priorities, present actionable recommendations, and anticipate organizational needs.
• →Stay current on trends, challenges, and innovations in the healthcare, nonprofit, and rare disease sectors to inform ARC’s strategy and programs.
• →Assume additional responsibilities as appropriate to the role and organizational needs.

• Advanced degree (Master’s or higher) preferred, with 7-10+ years of progressive responsibility, including at least 5 years in a leadership or management capacity. Nonprofit leadership experience strongly preferred.
• Experience managing or overseeing a diverse portfolio of research and research-adjacent programs, including human subjects research, natural history studies, endpoint development, and/or collaborative scientific working groups; comfortable getting into data directly- running analyses, reviewing outputs critically, and contributing substantively to research design and interpretation.
• Demonstrated track record of successfully designing, leading, and delivering programs through cross functional and multi-stakeholder teams.
• Demonstrated ability to lead and sustain multi-stakeholder collaborations, particularly in environments where partners contribute on a voluntary or time-limited basis; adept at maintaining momentum, engagement, and accountability across diverse groups through thoughtful and innovative approaches.
• Ability to engage substantively in ARC's research programs, with comfort facilitating expert discussions and working knowledge of health outcomes research, human subjects principles, and good clinical practices.
• Exceptional interpersonal and communication skills, with the ability to engage and influence diverse stakeholders across sectors.
• Proven leadership ability to inspire, mentor, and directly manage teams and individuals toward excellence while fostering collaboration and accountability.
• Experience and demonstrated ability to balance and manage multiple priorities, projects and deadlines; ownership of the work and outcomes.
• Experience managing departmental budgets, contracts, and external partnerships.
• Highly organized, very detail-oriented, proactive and takes initiative. Ability to perform and prioritize multiple tasks, exercise good judgment, and quickly identify and resolve problems.
• Demonstrated experience with communicating science to different audiences and through different media, including websites, emails, presentations, and publications.
• Passion for non-profits, health equity, patient engagement, and cross-sector collaboration.
• Commitment to ARC’s mission, values, and collaborative culture; demonstrates flexibility, compassion, and creativity, with a sense of humor.
• Proficiency with Microsoft Office, Salesforce (or similar CRM), project/document management tools (e.g., Smartsheet, Microsoft Project, Box).

Remote Work Opportunity - Work Schedule & Expectations:

This is a full-time, exempt position requiring 40 hours per week. The role is fully remote, with standard working hours from Monday to Friday, 9:00 AM to 5:00 PM Eastern Time, to ensure effective collaboration with the team.