Executive Director

FLSA Status: Exempt

Hours: Full-Time

Reports to: Board of Directors

Supervises: Operations Director, Policy Manager, Program Coordinator, Consultants

Location: Remote, US-based

Salary: $125,000-$140,000 (depending on experience)

Languages Required: English fluency

About the Organization

Generation Patient is an organization representing the 25 million+ young adults with chronic and rare conditions. The organization primarily leads reform efforts in the United States but also includes global initiatives. Over the last few years, Generation Patient has led more than 650 peer support meetings for its community of young adult patients, published multiple peer-reviewed publications, and driven policy and advocacy campaigns focused on clinical trial representation, patent reform, and increased oversight of pharmaceutical advertising on social media.

Generation Patient was established as a nonprofit in 2018, but its roots date back to 2013 with an initial focus on young adults living with inflammatory bowel diseases. Since its inception, the organization has expanded its mission to represent young adults with all chronic and rare conditions (i.e., lupus, arthritis, sickle cell, diabetes, epilepsy, among others), while continuing to operate one standalone, disease-specific program for inflammatory bowel disease. Today, Generation Patient is supported by four staff members and multiple contractors, with plans to expand its team over the next two years to meet growing demand. The team is fully remote with staff members located across the country.

Generation Patient has established itself as a leading voice in patient advocacy, disability justice, and access to medicines movements, forging impactful partnerships and coalitions both in the U.S. and internationally. Supported by well-known funders, the organization maintains full independence by declining all private health-industry funding, including from the pharmaceutical, insurance, and PBM sectors. This refusal of private health-industry funding is core to Generation Patient and ensures accountability and integrity for the young adult patients the organization represents.

About the Role

The next leader will guide Generation Patient through its transition from being founder-led to grow in its next chapter. They will oversee all aspects of the organization, sustain and scale impact, and remain committed to the young adult patient community that Generation Patient proudly serves. Leveraging Generation Patient’s deep-rooted partnerships with peer organizations and its strong relationships with funders and policymakers, the next leader will ensure a future for our patient community. They will oversee direct support programming and strategically drive systems-level change across healthcare and research.

The Executive Director will serve in partnership with the Board of Directors and will act as the primary external spokesperson, fundraiser, and advocate for Generation Patient. They will be responsible for leading Generation Patient’s programs and policy work, as well as overseeing operations, finance, human resources, and fundraising. The Executive Director’s role is to drive community-informed strategic direction and to oversee partnerships and collaborations that enable Generation Patient to achieve its mission and vision of elevating young adult patients on national and international platforms. As Generation Patient continues to work with global partners, the opportunity to serve as Executive Director arises at an exciting time to expand its impact for young adult patients worldwide.

Key Responsibilities include but are not limited to:

• Fundraising and Development: Build and sustain a diverse funding base with a focus on private individuals and large foundations; cultivate donor relationships and secure multi‑year support.
• Strategy and Outcomes: Define and execute an organizational strategy with measurable objectives that advance Generation Patient’s mission; ensure alignment of all programs and advocacy efforts with measurable outcomes that support young adults with chronic and rare conditions.
• Organizational Leadership: Lead an agile, efficient, and nimble nonprofit team; directly supervise staff while fostering growth, collaboration, and accountability.
• Capacity Building: Establish frameworks and resources that empower staff to take on external representation, policy engagement, and advocacy opportunities.
• Policy Strategy: Establish a policy strategy and remain committed to increasing the influence of young adults with chronic conditions on the national and international stages.
• External Voice: Serve as lead spokesperson and ambassador with funders, partners, and national health policy stakeholders.

Essential Role Functions

Organizational Leadership and Sustainability - 50%

• Collaborate with Board, staff, and others to cultivate an environment that upholds Generation Patient’s mission, building upon the organization’s foundation, which is rooted in its dedication to inclusive, accessible standards of operation and an ongoing pursuit of quality improvement throughout the organization.
• Lead in the creation of comprehensive short- and long-term planning processes to effectively carry out the organization's mission and vision in partnership with the Board, staff, and Generation Patient community.
• Provide leadership in the development, oversight, and evaluation of strategy, and implement fiscal strategy, ensuring the organization is financially healthy, compliant, and positioned for continued growth.
• Demonstrate operational excellence through effective metrics tracking and long-term strategic and tactical planning across multiple programs.
• Identify opportunities for organizational improvement, innovation, and growth based on data, the external environment, and trends impacting Generation Patient’s areas of work
• Maintain a robust and transparent relationship with the Board, ensuring open communication regarding the assessment of financial, programmatic, and impact metrics in comparison to predetermined milestones and objectives.
• Establish and implement a strategic direction for enhanced and diversified revenue creation from the organization's programs.
• Demonstrate unwavering integrity and values with a commitment to an intersectional approach to Diversity, Equity, Inclusion, and Accessibility.
• Work with the board and outside legal counsel to ensure Generation Patient adheres to the highest legal, ethical, and professional standards while promoting efficient and effective operations through sound business and financial practices.

Finance - 15%

• Take primary responsibility for the financial well-being, stability, capacity, and strategic growth of the organization.
• Develop and present a strategy that is approved by the Board and implemented by the executive team to ensure a consistently growing revenue stream.
• Evaluate and ensure the financial viability of new initiatives under consideration by the organization, considering evolving needs and priorities.
• Direct organizational processes for developing the annual budget and work closely with team members to ensure financially sound practices.
• Work with Generation Patient’s contracted accounting firm to meet the standards of an annual, independent audit.

Policy Strategy, Development and Implementation - 25%

• Work with the policy manager to research, analyze, and synthesize complex information from Generation Patient programs and the systems and policies that impact communities served by the organization
• Engage with stakeholders, government officials, industry leaders, and community groups to gather input and build support and partnerships for policy initiatives and advocate on behalf of the organization’s key communities
• Partner with communications consultants and internal staff to ensure Generation Patient’s leadership role in policy and advocacy work is actively promoted
• Conduct annual policy agenda review and analysis to understand outcomes and effectiveness of policy efforts

Programs and Direct Services - 10%

• Set expectations for program delivery and contribute to the continuous service evaluation of programming in support of Generation Patient’s mission.
• Evaluate the degree to which Generation Patient’s programs and policy work are successful in achieving desired strategies

Skills & Competencies

• Strong verbal and written communication skills; comfort and skill in representing the organization in one-on-one and group conversations, as well as presenting to larger groups
• Analytic and problem-solving skills; ability to understand community needs, the external environment, and strategically align Generation Patient’s work accordingly
• Strong skills in policy analysis and understanding of complex policy and legal documents
• Experience in fundraising for a nonprofit organization and in translating organizational strategy and programming into compelling grant proposals
• Able to work efficiently and independently as well as collaborate effectively with others
• Proven emotional intelligence and advanced conflict management expertise; strong interpersonal skills
• Flexibility with change in a growing organization

Work Environment

Position is remote. Work environment is based on a personal home office. Must be willing to have availability outside of 9-5 p.m. EST for international work and to accommodate West Coast staff when needed.

Physical Demands

Sitting or standing at a desk, working with a computer, including many hours of screen time and virtual meetings.

Travel Required

Extensive. 1-2 times per month, nationally, for organizational and partner events, policy and fundraising meetings, speaking engagements.

Experience Required

Significant prior relevant experience. Experience directly supervising people (i.e., full-time, part-time staff, and/or consultants). Experience in direct fundraising and in interacting with funders (reference from funder required).

Preferred experience includes:

• Leadership and supervisory experience within a growing organization
• Familiarity within public health, health policy, and health policy advocacy landscapes
• Experience shaping policy by leveraging advocacy, research, and communications tactics
• Excellent public speaking and communication skills with the ability to serve as a strong external voice for the organization
• A track record of working with both individual and institutional funders
• Academic publication research, including literature reviews and statistics
• Previous experience working in a remote team
• Previous experience working with young adults
• Lived experience with chronic disease or illness, or personal connection to someone with this lived experience

Work Authorization/Clearances

Will require a background check for work with young people around sensitive topics.

English fluency