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EveryLife Foundation for Rare Diseases
DC, United States (remote)
30 days ago
Siouxland Community Health Center
Sioux City, IA, United States (on-site)
30+ days ago
EveryLife Foundation for Rare Diseases
Dist. Columbia, United States (remote)
30 days ago


The EveryLife Foundation for Rare Diseases (EveryLife) is seeking a Senior Director of Marketing and Public Relations to join its team.

The EveryLife Foundation for Rare Diseases is a nonprofit, nonpartisan advocacy organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments, and cures. The Foundation works with patient advocates, lawmakers, industry, academic scientists, the Food and Drug Administration (FDA), and the National Institutes of Health (NIH) to advance the equitable development of and access to lifesaving diagnoses, treatments, and cures.

The Senior Director of Marketing and Public Relations serves as principal advisor providing communications, strategies and planning, media relations, and is responsible for leading the development and implementation of marketing and communication strategies. This position reports to the Executive Director and is a member of EveryLife’s senior leadership team.

This position may be a fully remote position, not based in the Washington, D.C. office.

Responsibilities to include, but are not limited to:

  • Leads marketing to drive attendance by patient advocates, KOLs, Members of Congress, Congressional staff and other members of the rare disease community to our programs and events;
  • Expands, implements, maintains and oversees the voice and brand of the Foundation;
  • Oversees Foundation’s website, creates and implements strategies to drive website traffic;
  • Develops content and language for our website and other materials as needed;
  • Oversees the social media strategy for the Foundation and ensures an active presence on multiple platforms;
  • Creates a strategy vision for the Foundation’s booths at internal and external events;
  • Ensures that policy objectives of the Foundation are accurately presented to the public to drive support for various forms of action for political advocacy;
  • Creates 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;
  • Develops and executes and earned media strategy, and serves as a spokesperson and lead point person on media interactions that help promote and/or impact EveryLife, monitors media and works to ensure the Foundation is ready to operationalize crisis management strategies as needed;
  • Work to develop other spokespeople for the organization including staff, board members and patient advocates by providing media training and talking points;
  • Oversees all external mass communications from the Foundation and provides support in the crafting and editing of e-mails, newsletters, blog posts, action alerts and marketing materials and annual report;
  • Optimizes SOE strategies and develops strategies for google add grants;
  • Identifies challenges and emerging issues and develops and implements communications strategies for advancing policy goals with key decisionmakers in the legislative and executive branches;
  • Provides ongoing assessment and evaluation of public relations and communications strategies to ensure that goals are being met;
  • Works with the Board and leadership team to develop public relations and communication goals for the organization and to ensure EveryLife’s mission is fulfilled through programs and long-term strategic planning;
  • Provides support in development of communications related budgets;
  • Works to meet the Foundation’s annual fundraising goals;
  • Provides guidance, mentorship and assists with professional development goals and objectives with team members including facilitation of team meetings and annual strategic planning;
  • Provides individual supervision for direct reports; and
  • Other duties as assigned.



The Senior Director of Marketing and Public Relations will have:

  • 4+ years in leading strategic messaging (strategic marketing, strategic communications, strategic advocacy, etc.) required, healthcare policy experience preferred;
  • Management experience required;
  • Experience in state or federal policy sectors. Experience in grassroots advocacy a bonus;
  • Experience with use of analytics and data, especially in marketing;
  • Proven ability to manage multiple projects simultaneously with established deadlines;
  • Excellent communication skills including the ability to draft, copy edit, and speak publicly;
  • Experience using word press and email management software; and
  • PRSA APR certification preferred.


This is a full-time, direct-hire position. The salary for this position is commensurate on experience, ranging $120,000 - $130,000 if located in the Washington, D.C. area, $110,000 - $120,000 if outside a commutable distance. The benefits package includes health, vision, and dental insurance, FSA, wellness reimbursement, cellphone stipend, WIFI stipend, 401k 6% match, and generous paid leave.


To apply, please send a current resume, cover letter and writing sample to Megan Pinegar at


4-year degree

Job Information

  • Job ID: 69045912
  • Workplace Type: Remote
  • Location:
    Dist. Columbia, United States
  • Company Name For Job: EveryLife Foundation for Rare Diseases
  • Position Title: Senior Director of Marketing and Public Relations
  • Job Function: Marketing Communications
  • Job Type: Full-Time
  • Min Education: BA/BS/Undergraduate
  • Min Experience: 5-7 Years
  • Required Travel: 0-10%
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