Career Opportunities - Desmoid Tumor Research Foundation

Career Opportunities

The Desmoid Tumor Research Foundation ( is a small, virtual, passionate, grassroots nonprofit committed to finding a cure for a rare soft tissue sarcoma called desmoid tumors. Founded in 2005 by two women deeply affected by this disease, we are relentless, laser-focused, and looking for a dedicated team player to join our mission.

We’re looking to grow our team. Are you interested in partnering with us to achieve our mission?





    • A team player who is comfortable working remotely on a small effective team
    • A flexible and collaborative self-starter, able to manage multiple deadlines, tasks and ad hoc requests
    • Eager to make a difference; curious to learn about this rare disease and its tight-knit global community’s needs, wants, fears, hopes, and dreams
    • Creative and bursting with ideas for how to best represent our content and messaging to our patient community, desperately seeking answers, the medical community, and donors, across all communication channels



    • Proficiency in Google Business Suite
    • Bachelor’s degree in marketing, journalism, PR, or relevant field 
    • 5+ years of experience in a social media, public relations, communications or digital marketing role
    • 1+ year managing one or more social media profiles for a private or nonprofit organization (preferably in the category of patient advocacy, health and/or research), and collaboratively managing  a content calendar
    • Strong understanding of current online marketing concepts, social media trends, strategy and best practices for posting across multiple platforms
    • Strategic mindset, ability to see the larger mission and goals in even the small details
    • Strategic, professional approach to short-term and long-term communications planning and management; ability to see the larger mission and goals in even the small details
    • Excellent writing, editing, and communication skills with a high comfort level with topics related to health, cancer, science, patient advocacy, clinical trials, and the pharmaceutical industry
    • Experience in drafting press releases or blog posts for a nonprofit organization
    • Ability to include strategic, mission-driven thought into all written and designed public-facing content
    • Strong, creative graphic design skills (as well as proficiency in Photoshop, Canva, etc.) with the ability to adhere to brand guidelines
    • Experience managing website content, including updating pages, creating pages, and posting timely content to the blog/newsroom in WordPress- Video editing and design expertise for various platforms 
    • Some experience with a social media scheduling tool (e.g., Hootsuite, etc.) and/or the scheduling tools of social platforms (e.g., Facebook Business Manager tools)
    • Deep familiarity with the back end of social media platforms, specifically Facebook and Instagram; includes ad creation/management, fundraising tools, and trouble shooting/ticket submission
    • Experience with understanding and gathering social media metrics for simple quarterly reports for the team
    • Strategic email marketing experience through Constant Contact, including writing for and designing graphics for regular email marketing efforts; analyzing relevant data and creating reports as needed; managing contact lists and segmenting
    • Comfort and experience with promoting a major annual event (experience promoting a hybrid event, in particular, is a plus)
    • Photography and videography skills preferred
    • Prior work at a patient advocacy organization is a significant plus



    • Work closely and collaborate with the Development Director and Operations Director to support organizational goals, ensure consistency in external voice, and maintain an engaged social media, website and email audience
    • Work with the team to identify content ideas, and manage and populate the organization’s social media content calendar to plan content multiple weeks and months in advance 
    • Ensure style and messaging consistency, and equal information dissemination, across communications channels
    • Create content (written, graphic, video) for social media posts and campaigns across all social platforms, including Facebook, Twitter, and Instagram, with our community and target audiences always front of mind
    • Develop and deploy paid advertising, including Facebook and Google Ads
    • In conjunction with the development department, manage Facebook fundraisers and capitalize on annual fundraising goals via Facebook peer-to-peer fundraising
    • Manage internal review process of content and plan for external review as needed (e.g., external IRBs)
    • Adapt content and compose original content for blogs 
    • Draft press releases for the organization as needed 
    • Design, market, and promote creative and engaging awareness, educational and fundraising-focused campaigns around major days of note, organization and partner events, DTRF Desmoid Tumor Awareness Month, annual DTRF Weekend, DTRF Running for Answers, year-end fundraising, and more
    • Creation and management of patient stories (and photos/videos) database
    • Updating website content, including updating pages, creating pages, and posting to the blog/newsroom in WordPress
    • Creating and sizing graphics and embedding video on the website
    • Create and adapt content for and manage Foundation’s email marketing, including the bi-monthly newsletter, monthly physicians newsletter, and ad hoc blasts (via Constant Contact). 
    • Be a key player in helping the Foundation expand email marketing efforts
    • Manage video library, edit video as needed and include proper branding for multiple platforms (including Vimeo), and generate captions
    • Create original videos from existing or new footage 



    • This is a 40-hour week full-time position Monday through Friday, and a rare weekend (including DTRF’s Annual Weekend which includes the 4th Sunday in September, beginning the Friday 2 days prior)
    • All team members work remotely, including The Communications Manager 
    • Some infrequent travel within the US may be required. 



    • The salary starts at $60,000 and is commensurate with experience. There will be opportunity for advancement.
    • Insurance benefits to be discussed.
    • Time off includes:
      • All Federal holidays
      • 4 weeks of PTO (with one week fixed during the Christmas holidays when we’re closed) (One week of the flexible PTO can be rolled over from year to year)
      • 10 days of sick leave



    • Your cover letter (required) emphasizing why you would like to work for a rare disease foundation
    • Your resume

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