Director of Communications and Marketing

About this role

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 .
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…