[Hiring] Director of Research @Amyloidosis Research Consortium (ARC)

Role Description

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.

The Director of Research leads the design and operational implementation of ARC's research portfolio, bringing scientific judgment and program management rigor to a range of prioritized initiatives. This role is accountable for translating strategic priorities into research projects/proposals and operational plans, managing timelines and deliverables, and ensuring seamless cross-functional execution.

The Director will partner closely with key stakeholders across companies, academia, regulatory agencies, non-profits, research funders, healthcare providers, and the patient community to ensure ARC’s programs are of the highest quality and meaningfully inform drug development and broader research efforts across amyloidosis. Focus areas within the department include:

• The Amyloidosis Forum, ARC’s public-private partnership that serves as the convening body aligning regulators, industry, and academia on drug development challenges in amyloidosis.
• Development, evaluation, validation, and optimization of disease-specific patient-reported outcome (PRO) measures for amyloidosis.
• Community research initiatives aimed at seeking to better understand amyloidosis patient experiences, perspectives, and outcomes.
• Development of a multifaceted data sharing program that will catalyze research across the community.
• Establishing a coordinated, multi-center natural history pathway for rare amyloidoses.

The Director of Research is responsible for the design and operational implementation of these programs, including coordinating activities across workstreams, managing project timelines and deliverables, identifying research-specific funding opportunities, contributing to grant writing, and cultivating stakeholder relationships that enable program success.

Reporting to the Executive Director of Research, this position serves as the operational leader of the research team, ensuring that programs move forward efficiently and with accountability. The Director will contribute to the annual planning process and development of ARC’s programs of work, translating strategic priorities into actionable project plans, tracking milestones, and evaluating program performance. The Director will manage and empower a small team, fostering a culture that is collaborative and encourages innovation, action, and impact.

The ideal candidate brings a strong operational and program management background, with demonstrated experience translating scientific priorities into well-coordinated, well-executed programs. They will demonstrate an in-depth understanding of the drug development continuum and confidently engage with a wide range of stakeholders, including academia, regulatory, life science companies, and medical professionals, to drive research programs that inform healthcare, clinical trial design, and patient experience.

This candidate is a self-starter, highly organized, execution-oriented, and skilled at coordinating across teams to keep complex, multi-stakeholder initiatives on track and on time. The ideal candidate is intellectually engaged in research design, able to identify the right questions, shape study approaches, and define endpoints, and brings that scientific foundation to the operational work of running complex, multi-stakeholder programs.

Qualifications

• 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.
• 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.
• 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.
• Experience managing departmental budgets, contracts, and external partnerships.
• Highly organized, very detail-oriented, proactive and takes initiative.
• Demonstrated experience with communicating science to different audiences and through different media.
• Passion for non-profits, health equity, patient engagement, and cross-sector collaboration.
• Commitment to ARC’s mission, values, and collaborative culture.
• Proficiency with Microsoft Office, Salesforce (or similar CRM), project/document management tools.

Requirements

• Serve as the operational leader of ARC’s research portfolio, coordinating and executing program activities across initiatives.
• Lead the design of research programs and projects, including defining research questions, study approaches, and success criteria.
• Drive the end-to-end execution of programs and partnerships from concept to completion.
• 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 and strategic decision-making.
• Build and maintain strong relationships with key stakeholders.
• Identify and pursue new opportunities for program growth, strategic partnerships, and funding.
• Develop and oversee department SOPs, workflows, and documentation systems.
• Lead by example, contributing directly to programs while mentoring team members.
• Represent ARC as a subject matter expert and thought leader in external forums.
• Monitor department performance and impact through measurable outcomes.
• Manage up and across effectively by collaborating with ARC’s senior leadership and Board.
• Stay current on trends, challenges, and innovations in the healthcare, nonprofit, and rare disease sectors.
• Assume additional responsibilities as appropriate to the role and organizational needs.

Benefits

• Paid Time Off (PTO): 4 weeks of vacation time, 8 days of sick leave, 10 holidays, and 2 floating holidays.
• Medical, Dental, Vision Insurance: Employees have access to comprehensive contributory health plans; ARC covers 65% of individual and family medical and dental insurance premiums.
• Life and Disability Insurance: 100% employer-paid Life and AD&D coverage, along with Short-Term and Long-Term Disability insurance.
• 401(k) Retirement Plan: Up to a 4% employer match to support your financial future.
• Additional Benefits: Employee Assistance Program (EAP), Workers’ Compensation, and other resources to support your well-being.