Employer: Chordoma Foundation

The Chordoma Foundation was started on the belief that the democratization of technology would give us the ability to make progress against our neglected disease on a scale that had previously only been possible for the most common ones. And that has turned out to be true: Technology has enabled our small but mighty team to connect with and serve the vast majority of chordoma patients in North America, to stimulate research in more than 300 labs and companies across the world, and to bring seven treatments into clinical trials — nearly unprecedented achievements for a rare disease.

Now, we’re scaling up our efforts. To engage and support more patients worldwide and build the capacity to quickly carry out in-house research, we need better data management and new technology solutions to support our work. Which is where our new Data and Technology Manager comes in.

In this role you’ll use your data management skills and technology prowess to empower our entire team to operate more efficiently. Specifically, you’ll:

  • Collaborate with our Director of Operations in managing the full suite of cloud-based applications that power our team’s work, and in implementing and updating our technology roadmap
  • Work closely with our Head of Engagement to deliver relevant content to our various audiences and to design and implement compelling constituent journeys
  • Support our Patient Services team in developing and delivering services and resources to meet the needs of the chordoma patient community
  • Assist our Research team in organizing and disseminating data needed to drive research progress


  • New, full-time position
  • Fully remote, open to candidates located anywhere in the U.S.
  • A flexible work schedule
  • Occasional travel (2-4 times per year) required for team meetings and Foundation patient/researcher conferences
  • Coordinates the work of multiple consultants/vendors (e.g. Salesforce and web developers)



  • Support our entire team in utilizing our Salesforce database to the fullest: continually monitor and work to improve data quality; perform bulk data imports and updates; create reports, views and dashboards to facilitate data analysis; set up forms and data connectors to automate data capture; assist with other enhancements as needed
  • Onboard new employees on our technology and train team members on new applications
  • Produce and update user-friendly documentation for all of our technology solutions
  • Assist staff with technology troubleshooting as needed
  • Partner with our Director of Operations to promote data privacy and mitigate cybersecurity risks, ensuring compliance with relevant privacy regulations (e.g. GDPR)
  • Manage data backup, retention and recovery
  • Continually look for and propose opportunities to implement user-friendly technology to make our team more efficient and effective


  • Serve as the primary administrator of our website: ensure that it remains operational and secure, update content as needed, maintain good search engine visibility across various geographies, and work with our web developers to implement upgrades and enhance functionality
  • Manage our email marketing system, including sign-up forms and lead capture, list management and segmentation, automation, and email coding
  • Use data to enable relevant and personalized engagement with all of our constituents across multiple channels
  • Monitor engagement metrics across all communications channels and collaborate with colleagues on initiatives to optimize key metrics
  • Prepare mailing lists for various appeals, events, and initiatives


  • Assist our Patient Services team in managing the platform powering our online patient community
  • Support our Patient Services and Research teams in adding new content and functionality to our website
  • Manage the technical operation of periodic webinars, virtual conferences and in-person events
  • Help to implement, maintain and improve technology solutions and manage data for various research programs including our biospecimen and model repositories, Drug Screening Program, and planned Patient Registry


  • Love of creating order, elegance and efficiency around you
  • A sharp sense for how (and how not) to structure/organize data to facilitate downstream use and analysis
  • Eagerness to delight both your colleagues and the constituents you serve by deeply understanding their needs and using your skills to address them
  • Ability to effectively manage a queue of requests from various colleagues, including balancing work to advance multiple open projects/requests simultaneously, setting realistic timelines, keeping stakeholders informed and delivering on schedule
  • Experience and natural comfort with a wide variety of modern SaaS tools, and an eagerness to explore and learn new ones; experience with Salesforce, Classy, WordPress, Google Analytics Tableau, and/or AWS a plus
  • Basic proficiency in HTML and CSS


The Chordoma Foundation offers a competitive salary and benefits package including:

  • 100% employer-sponsored health insurance plan
  • Dental and vision insurance
  • Short and long-term disability insurance
  • Life insurance
  • SIMPLE IRA with company matching
  • Holidays and paid time off

Holidays and paid time off

  • Support for professional development, learning and skills building
  • Highly nimble, efficient and tech-enabled work environment
  • Personal connection with the patients and families whose lives your work will touch