About Amyloidosis Research Consortium

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.

Amyloidosis is the term for a group of rare diseases in which an abnormal protein misfolds and deposits as amyloid in organs and tissues, causing damage and eventually organ failure. There are different types of Amyloidosis, and they vary from one another in their biochemical nature and natural history. Some are acquired, and others are inherited. Despite recent improvements in the use and development of diagnostic tools, increased disease recognition, and FDA approval of treatment options for both ATTR and AL amyloidosis (the most common forms of amyloidosis), there remain broader challenges in key areas that must be addressed by the amyloidosis community to ensure that all patients receive optimal care, regardless of their specific type of amyloidosis.

To learn more about ARC, visit http://www.arci.org.

About the Position

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.

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 (1) the Amyloidosis Forum, ARC’s public-private partnership that serve as the convening body aligning regulators, industry, and academia on drug development challenges in amyloidosis, (2) development, evaluation, validation, and optimization of disease specific patient reported outcome (PRO) measures for amyloidosis, (3) community research initiatives aimed at seeking to better understand amyloidosis patient experiences, perspectives, and outcomes, (4) development of a multifaceted data sharing program that will catalyze research across the community, and (5) 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.

Responsibilities

• 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.

Skills & 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; 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).

This is an exciting opportunity to work at a growing organization, with a team that values a diversity of experience and demonstrates an unwavering commitment to the amyloidosis community.

Equal Employment Opportunity
 We are proud to be an equal opportunity employer – and celebrate our employees’ differences, regardless of race, color, religion, gender, sexual orientation, gender identity, national origin, age, disability, or Veteran status.

Additional Information

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.

Comprehensive Benefits Package:

• Paid Time Off (PTO): 4 weeks of vacation time, 8 days of sick leave, 10 holidays, and 2 floating holidays. Additionally, we offer PTO-Free Days during the extended holiday break from Christmas to New Year’s Day.
• Medical, Dental, Vision Insurance: Employees have access to comprehensive contributory health plans; and 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.

How to Apply

Applications will be reviewed on a rolling basis. To apply, please visit https://arci.org/about-arc/careers/, select this position, and click the "Apply Now" button on the job posting page to submit your application.

Please include both a resume and a cover letter. We kindly ask that your cover letter be written in your own words, without the use of artificial intelligence (AI), as we value hearing your authentic voice and perspective. Applications submitted without a cover letter will be considered incomplete and will not be reviewed.

As part of your application, please also let us know where you learned about this opportunity.

Thank you for your interest in joining our team—we look forward to reviewing your application!