Executive Director

Executive Director

Trisomy Collaborative

 

About Trisomy Collaborative

 

Founded in 2024, the Trisomy 13 and 18 Collaborative is a national philanthropic initiative focused on improving clinical care, family support, research, and education for individuals and families impacted by Trisomy 13 and 18, rare chromosomal conditions associated with complex medical and developmental needs.

Families navigating these diagnoses often encounter inconsistent medical guidance, limited access to balanced information, significant variation in care approaches, and healthcare systems that are not well coordinated around their needs. The Collaborative exists to help improve that experience by advancing more informed, compassionate, and evidence-based care.

 

To realize this vision, the Collaborative serves as both a strategic grantmaker and national convener, partnering with health systems, academic institutions, professional societies, clinicians, researchers, families, and patient advocacy organizations to:

 

• Fund research and education

• Develop evidence-based resources to educate families and healthcare teams

• Improve health care teams’ capacity to care for families at every stage - from prenatal diagnosis through to decisions about medical interventions spanning the prenatal period through adulthood

 

At its core, the Collaborative is working to drive systems-level change in how Trisomy 13 and 18 are understood, communicated, and managed across the healthcare landscape.

 

While still in its early stages, the Collaborative has already built national momentum and engagement across the field. To date, the organization has awarded six grants totaling approximately $1 million focused on understanding current care practices, improving educational resources for clinicians and families, strengthening family support systems, and identifying opportunities to improve long-term care and outcomes for children living with Trisomy 13 and 18. The Collaborative is now preparing to launch a new round of multi-million dollar grantmaking and continue expanding its national impact.

 

The Collaborative has also established a 22-member multidisciplinary Steering Committee, convened two national conferences, and built a growing network of more than 200 clinicians, researchers, support professionals, and family advocates who participate in ongoing virtual roundtables and monthly convenings. These efforts have helped establish an important foundation of research, collaboration, and field engagement that now positions the organization for its next phase of growth and implementation.

 

Current strategic priorities include supporting the development of specialized care centers and coordinated care models across the country, establishing a patient registry to strengthen data and research efforts, and ensuring that funded research and initiatives translate into practical tools, educational resources, and measurable improvements in care delivery for families and healthcare providers alike.

 

With long term philanthropic support, including a multi-year commitment totaling $15M, the Collaborative is positioned to play a leading role in advancing care and support for families affected by Trisomy 13 and 18.

For more information, please visit: https://trisomycollaborative.org/

 

About New Venture Fund

 

The Trisomy 13 and 18 Collaborative (the “Collaborative”) operates as a fiscally sponsored project of New Venture Fund (NVF), a leading 501(c)(3) public charity established in 2006. Through its fiscal sponsorship platform, NVF provides the administrative, financial, and legal infrastructure that enables mission-driven projects to operate efficiently and scale their impact.

To learn about NVF: https://newventurefund.org/

 

Role Summary

 

The Trisomy 13 and 18 Collaborative is seeking an inaugural Executive Director to help lead the organization into its next phase of growth, execution, and impact. This role is centered on building alignment across clinicians, researchers, families, healthcare organizations, and philanthropic partners to improve care and support for individuals and families impacted by Trisomy 13 and 18.

 

As the Collaborative’s first full-time leader, the Executive Director will have full oversight of strategy, grantmaking, operations, and execution. As a fiscally sponsored project of New Venture Fund, the Collaborative ultimately reports to the President of NVF, while the Executive Director will work closely with an engaged Advisory Board to help shape strategic direction and organizational priorities. The organization is not starting from scratch. A network of consultants currently perform core functions across research, grantmaking, stakeholder engagement, communications, and strategy; with operational support provided through NVF. Over time, this leader will assess and evolve the operating model - building internal capacity and bringing select functions in-house as appropriate.

 

The organization has already established important foundational work through strategic grantmaking, national convenings, and field-building efforts. The next Executive Director will help move the Collaborative from foundational research and learning toward implementation - advancing coordinated care models, strengthening family support efforts, supporting research and educational initiatives, and helping convene leaders across the trisomy care ecosystem to drive greater collaboration and progress.

 

This role is ideal for a collaborative and entrepreneurial leader who has experience building and scaling health-focused initiatives, navigating complex stakeholder environments, and helping organizations move from research and planning toward improvements in care, coordination, and patient and family support. While a clinical background is not required, the ideal candidate will bring knowledge of healthcare systems and the ability to engage credibly with medical, research, and family communities across the field.

 

Key Responsibilities Include:

 

• Strategic Leadership & Vision: Provide overall strategic leadership for the Collaborative, translating mission and long-term vision into actionable priorities, milestones, and organizational growth strategies.

• Organizational Leadership & Execution: Oversee the successful implementation of the Collaborative’s initiatives while ensuring alignment with strategy and donor intent.

• Grantmaking & Strategic Investments: Oversee the Collaborative’s grantmaking and funding strategies to ensure investments effectively advance research, education, and long-term strategic priorities.

• Board & Governance Partnership: Serve as the primary liaison to the Advisory Board, ensuring strong governance practices, strategic alignment, and informed decision-making across the organization.

• Operational & Administrative Oversight: Oversee core operational functions including staffing, consultant management, budgeting, governance coordination, and organizational risk management.

• Financial Stewardship & Planning: Lead annual planning and budgeting efforts while ensuring thoughtful stewardship, monitoring, and alignment of financial resources with organizational priorities.

• Cross-Sector Relationship Building: Cultivate strong relationships with healthcare systems, researchers, advocacy organizations, educational institutions, consultants, and families to advance collaboration and systems-level impact.

• Communications & External Representation: Serve as a primary spokesperson and ambassador for the Collaborative, guiding external communications, messaging strategy, and stakeholder engagement efforts.

• Team Leadership & Organizational Development: Oversee the Collaborative’s consultant-driven operating model, including evaluating organizational structure, staffing needs, and future hiring approaches to support long-term growth and execution.

 

Leadership & Competency Expectations

 

While no single candidate will bring every qualification, strong candidates will offer many of the following skills, characteristics, and experiences:

 

Mission Alignment and Empathy: Brings sensitivity to the experiences of individuals and families facing significant healthcare, developmental, and support needs, along with a genuine commitment to improving care, coordination, awareness, and understanding of Trisomy 13 and 18 to help drive better long-term outcomes.

 

Strategic Leadership for Systemic Change: Sees the broader healthcare landscape, identifies where to drive change, translating emerging research and ideas into a clear, focused strategy and execution. Connects research, education, and practice to prioritize initiatives that influence systems-level outcomes.

 

Building and Scaling Health Initiatives: Brings experience building and scaling health-focused initiatives within complex and evolving environments. Understands how to create strategy, structure, align stakeholders, and move initiatives from early-stage development and planning toward implementation and long-term organizational impact.

 

Healthcare and Research Credibility: Brings expertise working with healthcare systems and the ability to engage credibly with clinicians, researchers, and medical professionals. Demonstrates intellectual curiosity, strong listening skills, and the ability to absorb complex medical concepts and navigate nuanced healthcare conversations.

 

Location, Compensation, Benefits

 

The Executive Director role is fully remote, with flexibility for candidates located anywhere in the United States, with expectation to travel periodically for stakeholder engagement, convenings, and key partnership meetings.

 

Compensation for this role ranges from $275,000 - $325,000, commensurate with experience and qualifications. The organization offers a highly competitive benefits package, including fully employer-paid insurance coverage, retirement benefits with employer contributions, paid time off and holidays, paid family and medical leave, and additional benefits that support employee well-being and work-life balance.

 

Featured benefits

 

Medical insurance, Vision insurance, Dental insurance, 401(k), Paid maternity leave, Disability insurance