Director of Communications and Marketing

About the Amyloidosis Research Consortium (ARC): a 501c(3) nonprofit founded in 2015 that harnesses collaboration and innovation to advance science and improve the lives of those with amyloidosis. ARC transforms research by forging partnerships across industry, research, clinical care, and regulatory sectors to address unmet needs and accelerate new treatments. The organization empowers patients by ensuring access to quality care and information. Amyloidosis is a group of diseases caused by abnormal protein buildup in organs, affecting thousands in the U.S. and worldwide—with many cases undiagnosed.

About the role

The Director of Communications and Marketing leads ARC’s communications function, partnering closely with the CEO and department leads to advance organizational goals. This highly visible, hands-on role requires a strategic thinker who can set direction, translate it into practical plans, and produce high-quality work while coordinating people, partners, and resources. The Director oversees contractor resources and the communications budget, determining how to deploy them for maximum impact. This entrepreneurial opportunity allows you to build, shape, and grow ARC’s communications function, increasing its capabilities, reach, and impact as the organization evolves.

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 to focus resources on the highest-impact opportunities.
  • Grow communications reach, impact, infrastructure, and capabilities as ARC evolves.
• 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 to ensure a clear, cohesive identity 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), aligning 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.
• Record of hands-on execution, and experience selecting and managing external vendors, including larger-scale website redesign or other major digital projects.
• 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.

Benefits

• Paid Time Off (PTO): 4 weeks of vacation time, 8 days of sick leave, 10 holidays, and 2 floating holidays. PTO-Free Days during the extended holiday break from Christmas to New Year’s Day.
• Medical, Dental, Vision Insurance: 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.
• Flexible Spending Accounts (FSA): Options for both Health and Dependent Care FSAs.
• 401(k) Retirement Plan: Up to a 4% employer match.
• Additional Benefits: Employee Assistance Program (EAP), Workers’ Compensation, and other resources to support well-being.

Pay

$120,000 – $135,000 USD per year.

Schedule

Full-time, exempt position requiring 40 hours per week. Fully remote, with standard working hours from Monday to Friday, 9:00 AM to 5:00 PM Eastern Time.