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FTD Disorders Registry Communications Manager

Job Details

Fully Remote
Full Time


Are you looking to make a difference in the world?

Looking to take the next step in your career with an impactful organization helping people?

Join the FTD Disorders Registry (FTDDR), LLC, a non-profit entity working to accelerate the science towards treatments and cures for the most common cause of dementia under 60, known as FTD, and including diagnoses of behavioral variant FTD, primary progressive aphasias, FTD-ALS, corticobasal syndrome, and progressive supranuclear palsy. We advance research by providing tools and resources to help people learn about research opportunities, to collect and share data to advance the science, and to amplify the voice of the patients’ and families’ lived experience. All Registry staff are hired as employees and team members of AFTD, an affiliated non-profit that co-founded and manages the Registry as an LLC. AFTD is the leading organization dedicated to ending FTD. We help families affected today, and drive research to bring hope for the future.


The successful candidate will be a resourceful, confident, goal-oriented, self-starter who is comfortable working with patients, caregivers, and clinical researchers. This remote-based position will preferably be located near King of Prussia, PA and work under the guidance of the Registry Director.


Job Description


The Communications Manager will manage a portfolio of content for print and electronic communication channels, crafting materials targeted to varied segments of our audience. They will develop, maintain, and update content (text, images) for the FTDDR website ( They will develop/manage outreach campaigns, support colleagues in creating visual representations (charts, graphs) of basic demographics and research data, and assist with hosting webinars.



Essential Job Functions

  • Coordinate/develop/implement all outreach materials, activities, and campaigns under direction of the Registry Director and in collaboration with FTDDR team members.
  • Maintain responsibility for all FTDDR print and electronic publications, including:
    • manage overall content development and updates to maintain robust, interactive FTDDR website,
    • create content & manage Registry social media communications (FB, Twitter, LinkedIn, YouTube),
    • create content for FTDDR quarterly e-Newsletter, e-Blast notices, ‘Press Releases’, infographics,
    • create branded video content, process video files, and manage the FTDDR YouTube channel.
  • Establish a content development plan with timetable for communications and outreach.
  • Manage email marketing automation software inclusive of all outgoing communications.
  • Track website, email, and social media analytics; use metrics to refine messaging and outreach.

Other Job Functions

  • Maintain calendar and project management systems to track communications and outreach/engagement activities.
  • Assist with preparing scientific presentation materials; maintain branded slide template, create charts/graphs, design layout, and content development.
  • Liaise with approved external research teams to be supported by the Registry for recruitment/referral support through Registry communication channels.
  • Organize and serve as technical host for occasional Registry webinars.
  • Manage FTDDR branding (trademark and style guide) across all print and electronic media; maintain shareable assets pool for external users.
  • Carryout essential Registry operations tasks as needed for staff coverage.


  • This position is an individual contributor and does not have any supervisory responsibilities


Knowledge, skills, and abilities required for this role:

  • BS/BA in communications, journalism, or marketing or equivalent job experience.
  • Training in human subjects' research (CITI program or similar).
  • Experience communicating scientific and technical information to a lay audience.
  • Excellent skills in written communication and marketing.
  • Demonstrated experience managing communications/marketing/public relations activities as well as cultivating social media presence (Facebook, Twitter, YouTube, LinkedIn, etc).
  • Demonstrated ability to collaborate on multiple concurrent projects with dynamically changing priorities.
  • Excellent Microsoft Office Suite and web communication skills.
  • Experience with visual design and/or photo-editing and/or video-editing software (Adobe CC) is highly desirable; familiarity with database/CRM software, CMS software (Drupal, WordPress, Beaver builder), project management tools (, and survey deployment is a plus.


Interview Process

  • Submit a cover letter and resume
  • Phone screen with a member of AFTD’s HR department
  • Interview with Hiring Manager
  • Team interview with department staff
  • Offer made to final candidate (contingent on reference and background checks)
  • Additional interviews or assessments may be required dependent on position

Awards & Accolades

  • Platinum Transparency 2023 by GuideStar, an organization that collects and publishes IRS-verified data about charitable organizations, issuing Seals of Transparency based on how much information each charity provides
  • 4-star rating on Charity Navigator, an organization that assesses nonprofits' organizational effectiveness through IRS filings and metrics such as, Impact & Results, Accountability & Finance, Culture & Community, and Leadership & Adaptability

Benefits and Perks

AFTD offers a competitive salary and is committed to providing a comprehensive benefits package to meet the needs of our employees and their families, including:

  • Medical, Dental and Vision insurance for eligible employees regularly working 30 hours or more per week - presently AFTD covers 100% of employee individual medical coverage
  • Basic Life Insurance/AD&D
  • Company-paid short-term and long-term disability insurance
  • Identify Protection
  • Voluntary Term Life/AD&D
  • Pet Insurance
  • Employee Assistance Program
  • SIMPLE IRA with company match
  • Generous paid vacation and sick time
  • 10 paid holidays
  • A company culture that encourages work/life balance
  • Ongoing team building opportunities, including staff retreats and days of service
  • Ongoing professional development training and opportunities
  • Business casual dress code

The Association for Frontotemporal Degeneration requires all new employees to present proof they are fully vaccinated against COVID-19 when they start work. Currently, fully vaccinated is defined as someone that has received both doses of the Pfizer/Moderna COVID-19 vaccines or one dose of the Johnson & Johnson COVID-19 vaccine 14 days or more before they begin work. Individuals with a disability or a religious reason preventing them from taking the vaccine may request an accommodation.


AFTD is committed to creating a diverse environment and is proud to be an equal opportunity employer. All qualified applicants will receive consideration for employment without regard to race, color, religion, gender, gender identity or expression, sexual orientation, national origin, genetics, disability, age, or veteran status. All of your information will be kept confidential according to EEO (Equal Employment Opportunity) guidelines.