Chief Marketing and Communications Officer, EveryLife Foundation for Rare Diseases

Location: This position may be a fully remote position, not based in the Washington, D.C. office.
Wage Category: The salary for this position is commensurate with experience, ranging from $175,000 - $190,000 if located in the Washington, D.C. area, and $167,000 - $182,000 if outside a commutable distance.

The EveryLife Foundation for Rare Diseases is seeking a Chief of Marketing and Communications Officer (CMCO) to join its team.

The EveryLife Foundation for Rare Diseases (EveryLife Foundation) is a science-based nonprofit, nonpartisan advocacy organization dedicated to bringing treatments to over 30 million Americans with rare diseases. The Foundation works with patient advocates, lawmakers, industry, academic scientists, Food and Drug Administration (FDA), and National Institutes of Health (NIH) to advance the equitable development of and access to lifesaving diagnoses, treatments, and cures.

The CMCO serves as principal advisor charged with executing comprehensive marketing and communications strategies to promote and amplify the EveryLife Foundation for Rare Diseases’ brand across platforms. The CMCO will lead all communications externally, oversee Foundation’s marketing operations, and ensure timely and consistent internal communication to create awareness of plans and initiatives across the organization. The CMCO will work collaboratively with leadership and other key stakeholders in setting the vision for and leading the marketing and communications team, including media and public relations, brand and creative, mission materials, digital, social, and web marketing, lead generation and acquisition, and strategic communications. This person will also collaborate closely with the CEO and executive team to develop, execute, and evaluate the organization’s strategic vision.

Principal Duties And Responsibilities

Help shape Foundation’s overall organizational strategy and message, and incorporate communications and marketing into serving Foundation’s strategic objectives;

• Work with leadership to develop public relations and communication goals for the organization and to ensure Foundation’s mission is fulfilled through programs and long-term strategic planning;

• Develop and execute a crisis communication plan;

• Create marketing/public relations strategy that will allow EveryLife to cultivate and enhance meaningful relationships with targeted, high-level external audiences, including the media and key influencers;

• Develop communications message maps, issue pillars, and communications positioning to drive issue and brand awareness;

• Own Foundation’s brand, organizational voice, and visual identity. Define org-wide messaging, develop tailored narratives for specific audiences, and provide guidance and oversight to ensure consistency with Foundation’s core messaging across a range of outward-facing materials;

• Identify challenges and emerging communications issues and develop and implement communications strategies for advancing policy goals with key decision-makers;

• Collaborate with executive leadership team to develop strategies, including op-eds and trade media placements, reflecting EveryLife’s position as thought leaders in the rare disease community;

• Develop digital strategy, including SEO, to drive lead generation and attract new program participants, supporters, donors, and partners;

• Provide ongoing assessment and evaluation of public relations and communications strategies to ensure that goals are being me;

• Work with executive leadership team to prioritize media opportunities, and prepare talking points, speeches, presentations, and other supporting material as needed;

• Ensure that policy objectives of the Foundation are presented in an honest and clear manner to the public to drive support for various forms of activation;

• Develop and execute and earned media strategy;

Serve as a spokesperson and lead point person on media interactions that help promote and/or impact EveryLife, including crisis management;

• Work to develop other spokespeople for the organization including staff, board members, and patient advocates by providing media training and talking points;

• Craft and maintain a compelling narrative that effectively communicates Foundation’s story and impact;

• Expand, implement, maintain, and oversee the voice and brand of the Foundation;

• Lead marketing of all events to drive attendance by patient advocates, KOLs, Members of Congress, Congressional staff, and other members of the rare disease community;

• Oversee Foundation’s website and strategy to drive traffic to the Foundation’s website;

• Oversee the social media strategy for the Foundation and ensure an active presence on multiple platforms to increase brand awareness, engagement, and conversations;

• Work with EveryLife staff to develop content and language for our website and other materials as needed;

• Conceptualize cause marketing campaigns and sponsorship activations that align with Foundation’s mission and resonate with audiences;

• Oversee consistent, high-quality messaging across all external communications vehicles;

• Oversee segmented email campaigns, website, social media, and digital initiatives to educate and engage audiences;

• Provide support in the crafting and editing of e-mails, newsletters, blog posts, action alerts, and marketing materials;

• Optimize SEO strategies and develops strategies for Google ad grants;

• Train, support, and supervise Communications team members; and

• Other duties as necessary.

Occasional travel, weekend, and evening work may be required.


Bachelor’s degree, with a least ten years of related experience;

• Successful record leading strategic messaging (strategic marketing, strategic communications, strategic advocacy, etc.) required, healthcare policy experience preferred;

• Senior leadership and management experience required;

• Experience with use of analytics and data, especially in marketing;

• Proven ability to manage multiple projects simultaneously with established deadlines; and

• Excellent communication skills including the ability to draft, copy edit, and speak publicly.

More Information


This is a full-time, direct-hire position. The benefits package includes health, vision, and dental insurance, FSA, wellness reimbursement, cellphone stipend, WIFI stipend, 401k 6% match, professional development, and generous paid leave.

How to apply
To apply, please send a current resume, cover letter and writing sample to careers at, with “Chief of Marketing and Communications” in the subject headline.