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The TANGO2 Research Foundation (T2RF) is seeking a dynamic leader to serve as the Research Engagement Director. This is an exciting time to join our foundation to help create and cultivate an organization that makes a real difference and transforms the lives of patients living with TANGO2 disease, a rare disease discovered in 2016. The mission of the TANGO2 Research Foundation is to lead the way in finding a cure for TANGO2 disease by funding, coordinating and guiding scientific research.

Reporting to the Executive Director, the Research Engagement Director works with the Research Committee and Scientific Advisory Board to successfully develop, spearhead, and implement a strategic research plan for the TANGO2 Research Foundation.

The Research Engagement Director will lead the way in growing our global, collaborative research network, and direct our research engagement and science strategy. In this role, the person will act as liaison between the TANGO2 Research Foundation and our wide range of scientific stakeholders to facilitate empathy-driven research and clinical outcomes.

The Research Engagement Director is responsible for managing all scientific research supported by the organization through our grant program including evaluation of proposals, coordination of funding and overall project tracking and accountability. Other key duties include finding and applying for potential grant funding, establishing industry partners, and being the key liaison to current and potential TANGO2 scientific/medical community.

There is currently no direct report for this position. The Research Engagement Director may also be responsible for identifying, contracting, and retaining additional team members in the future based on the growing needs of the organization.

This unique opportunity comes at a time when we’re poised to accelerate our mission by engaging a growing network of international families, doctors and researchers. We are honored to be one of the rare disease organizations selected to participate in the Chan Zuckerberg Initiative’s (CZI) first Rare as One Network cohort. In this three-year program, CZI provides organizations with funding, training, community mentorship, and capacity building resources to enable and scale a model in which patients, researchers, and clinicians work together to advance progress against their specific rare disease.
Role and Responsibilities:

  • Working with key stakeholders, develop the Foundation’s overall scientific strategy and research roadmap. Create goals, identify impact metrics and make recommendations that promote growth and continuous improvement to our research efforts (30%)
  • Manage the Foundation’s grant program, including: writing requests for applications, soliciting proposals, responding to inquiries, formatting applications, managing review process, negotiating contracts, tracking progress, maintaining database of publications, updating website, and following up at mid-term and project completion (20%)
  • Research, identify and apply for grant opportunities for the Foundation. Manage a grants calendar and keep track of various deadlines (15%)
  • Be aware of current research in TANGO2/TANGO2 disease and write research synopses for publications (5%)
  • Communicate with patient community regarding current research and opportunities to participate, including presenting at gatherings and updating website and/or social media with news and advancements (5%)
  • Build and strengthen relationships with NIH, FDA, industry partners, and/or peer organizations by networking, attending meetings/conferences to place the T2RF in a position of prominence (5%)
  • Identify and develop relationships with highly qualified labs and researchers who might be interested in partnership or funding opportunities (5%)
  • Assist in planning of scientific meetings, the biennial TANGO2 Family Conference and TANGO2 Research Symposium. (5%)
  • Maximize participation of patients in the TANGO2 Natural History Study and CoRDS Registry (Centralized international patient registry for TANGO2 disease) (5%)
  • Help the advancement of early detection screenings and diagnosis of TANGO2 disease (5%)


  • An M.S. or Ph.D. degree is required, with at least two years’ experience post-baccalaureate working on scientific projects in an academic, industrial, non-profit, or government setting.
  • Clinical or basic science research experience required.
  • U.S.-based preferred and/or have an understanding of the U.S. healthcare and research systems.
  • Experience working with patients or caregivers as partners in research and a desire to continue doing so is required.
  • Grant writing experience is strongly preferred
  • Strong organizational skills and attention to detail are required. The successful candidate will have demonstrated the ability to manage a diverse and adapting workload with limited supervision, set priorities, and follow projects through to completion, including experience developing budgets and tracking spending against budgets.
  • Stellar communication skills are required, especially in science communication, including verbal communication in-person and by telephone and both formal (e.g., reports, letters) and informal (e.g., email) written communication. The successful candidate must communicate clearly with people having a variety of experiences, including scientific and clinical professionals, individuals from diverse cultural backgrounds, and those with disabilities or their caregivers.
  • Comfort with technology is required, including setting up and utilizing web meetings, teleconferences, online secure sharing of documents, and scheduling meetings across multiple time zones. Proficiency with Microsoft Word, PowerPoint, Excel, Zoom, and Google Suite is expected.
  • Experience with scientific project management, clinical research coordination, and IRB processes is preferred.
  • Ability to travel to meetings up to (2) times per year
  • Participates in board, research committee and staff meetings as needed
  • International experience and interest in rare diseases is helpful
  • A commitment to diversity and inclusion

Location: This is a remote position. You’re free to work where you work best, anywhere in the US: home office, co-working space, coffee shops. While we currently have an office in Connecticut, you should be comfortable working remotely.

Job Type: Full-time


  • Flexible schedule
  • Paid time off


  • Day shift
  • Monday to Friday
  • Weekend availability


  • Master’s (Preferred)


  • Science & Research: 2 years (Required)
  • Project management: 2 years (Preferred)
  • Grant Writers & Managers: 1 year (Preferred)

Work Location: Remote

To apply, submit cover letter, salary requirement and resume to