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 a group of diseases where abnormal proteins build up in organs, causing progressive damage. In the U.S., approximately 3,800 new AL amyloidosis cases are diagnosed annually. However, ATTR amyloidosis affects far more people: over 100,000 Americans have the age-related form, and 50,000 people worldwide have the inherited form. Studies show that roughly 13% of older heart failure patients actually have undiagnosed ATTR amyloidosis, meaning the true patient population is even larger. As awareness and diagnosis improve, the community continues to grow.

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

About the Position

The Director of Communications and Marketing leads ARC’s communications function and works closely with the Chief Executive Officer (CEO) and department leads to advance the organization’s goals. This is a highly visible, hands-on role for a strategic thinker who is equally strong at execution: someone who can set direction, translate it into practical plans, produce high-quality work, and coordinate the people, partners, and resources needed to deliver results.

The role includes oversight of dedicated contractor resources and the communications budget, with responsibility for independently determining how those resources are best deployed. This is an entrepreneurial opportunity to build, shape, and grow ARC’s communications function, increasing its capabilities, reach, and impact as the organization evolves.

Reporting to the CEO, the Director partners closely with the development team and program leadership to strengthen engagement with the people and organizations ARC serves. This includes helping translate awareness and interest into philanthropic support while leading ARC’s broader communications portfolio across brand, digital experience, website, email, social media, program, campaign, and event communications.

The Director owns communications planning, production, timelines, and cross-organizational coordination, and measures performance to refine ARC’s approach and improve results over time.

This is an exciting opportunity to join a growing organization and a team that values diverse experiences and shares an unwavering commitment to the amyloidosis community.

Responsibilities

Communications Leadership and Strategy

• Own the annual communications and marketing plan, aligned to ARC’s strategic goals.
• Manage communications through a shared content calendar with clear ownership, timelines, prioritization processes, and cross-department planning tools (such as RACI).
• Set priorities and recommend tradeoffs so resources focus on the highest-impact opportunities.
• Grow communications reach, impact, infrastructure, and capabilities as ARC continues to evolve.

Development and Fundraising Communications

• Partner with the development team to design and execute integrated, multi-channel fundraising campaigns (e.g., annual appeals, Giving Tuesday) that convert engagement into philanthropic support.
• Produce donor stewardship communications, impact and annual reports, and major-gift materials.
• Advance a story-based fundraising approach that humanizes ARC’s impact and drives donor growth.

Brand, Website, and Digital Experience

• Lead ARC's brand strategy and architecture, ensuring programs, initiatives, and partnerships maintain distinct identities while reinforcing a cohesive ARC brand across all communications.
• Lead communications planning and messaging for major initiatives, new programs, partnerships, and organizational changes; ensuring a clear, cohesive identity and experience for all stakeholders.
• Lead a comprehensive website redesign with an external contractor in year 1, including brief, quotes, and end to end delivery, with a focus on donor and patient/caregiver journeys.
• Own ongoing website content, performance, and improvement in partnership with the web developer.

Content, Email, and Social Media

• Develop storytelling that elevates patient, caregiver, and clinician voices.
• Translate scientific and clinical findings into clear, engaging content for lay audiences.
• Own ARC’s email communications, including newsletters, automated segmentation, and list health, as a primary channel for engagement and giving.
• Set and execute channel-specific social media strategies across audiences with a steady posting cadence across platforms.
• Manage a monthly cadence of blog posts by maintaining the editorial calendar, coordinating authors, and editing for scientific accuracy through advisor review.

Program and Event Communications

• Support programs with key materials and templates (such as booklets, toolkits, reports), with clear alignment on deliverables and timelines with department leads.
• Lead communications for ARC’s signature convenings, educational and collaborative programs, from promotion and registration through post-event follow up.
• Monitor developments in the field and lead timely, rapid-response content that establishes ARC's point of view on emerging topics and answers community questions.

Measurement, Vendors, and Tools

• Maintain a communications dashboard with monthly updates and quarterly reports focused on engagement, donor conversion, and impact; benchmarked against peer organizations.
• Evaluate performance, run post-campaign reviews, and continuously improve based on results.
• Leverage external vendors and contractors to expand ARC’s communications capacity while effectively managing the communications budget.
• Evaluate and adopt emerging tools, including AI, to improve workflows and capacity with appropriate quality and human oversight.

Qualifications

Required

• 7+ years of progressively responsible experience in nonprofit communications, marketing, or external relations, including direct experience supporting fundraising and donor communications.
• Experience advising senior leaders and developing thought leadership, media relations, or external communications strategy.
• Demonstrated success planning and executing integrated, multi-channel campaigns (email, social, web, print) that measurably grew engagement and/or revenue.
• Exceptional writing and editing skills, with the ability to move fluidly between emotive storytelling and clear explanation of complex or scientific content for lay audiences.
• Proven ability to evaluate and adopt emerging communications technologies, including AI-enabled tools, to improve communications planning, content development, and organizational effectiveness.
• Strong project management and executive function: prioritizing across many projects and bringing structure to cross-functional work.
• A record of hands-on execution, and experience selecting and managing external vendors, including larger scale website redesign or other major digital project.
• Fluency with communications data: comfortable defining KPIs, building dashboards, and using metrics to drive decisions.

Preferred

• Experience in a rare disease, patient advocacy, health, or scientific/medical nonprofit.
• Experience with CRM and email platforms (Salesforce experience a plus), social tools, and design tools (e.g., Canva, Adobe Creative Suite).
• Experience with brand strategy or brand architecture work.
• Experience in a small, entrepreneurial nonprofit or similarly lean, fast-paced organization where adaptability, initiative, and hands-on execution are essential.

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.
• Flexible Spending Accounts (FSA): Options for both Health and Dependent Care FSAs.
• 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!