Executive Director

Generation Patient represents the 25 million+ young adults with chronic and rare conditions. Over the last few years, the organization has led more than 650 peer support meetings, 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. The organization primarily leads reform efforts in the United States and has a growing international profile.

Generation Patient was established as a nonprofit in 2018, with roots dating back to 2013, initially focusing on young adults living with inflammatory bowel diseases (IBD). Since its inception, the organization has expanded its mission to represent young adults with all chronic and rare conditions (e.g., lupus, arthritis, sickle cell, diabetes, epilepsy). Today, with an annual budget of $750,000, Generation Patient is supported by four staff members and contractors, with plans to expand its team over the next two years. The team is fully remote, with staff 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. Its advocacy is pragmatic and evidence-based, working across the political spectrum to advance policy solutions. The organization maintains full independence by declining all private health-industry funding, including from the pharmaceutical, insurance, and PBM sectors.

About the role

The Executive Director will oversee all aspects of Generation Patient, sustain and scale its impact, and remain committed to the young adult patient community. The next leader will ensure a future for the patient community by leveraging deep-rooted partnerships with peer organizations, funders, and policymakers. They will oversee direct support programming and strategically drive systems-level change across healthcare and research.

The Executive Director will act as the organization’s primary external spokesperson, fundraiser, and advocate, partnering with the Board of Directors to lead programs, policy work, operations, finance, human resources, and fundraising. The role is to drive community-informed strategic direction and oversee partnerships that elevate young adult patients on national and international platforms.

Responsibilities

• Collaborate with the Board, staff, and others to cultivate an environment that upholds Generation Patient’s mission, rooted in inclusive, accessible standards of operation and quality improvement.
• Partner with the Board and staff to define an organizational strategy with measurable goals.
• Assess the current team and organizational structure, clarifying roles and responsibilities and closing gaps.
• Support board recruitment, development, and governance.
• Maintain financial oversight and ensure compliant operations, including annual budget and audit.
• Lead funder engagement and stewardship efforts, diversifying philanthropic support through multi-year foundation partnerships and an individual giving strategy.
• Bring strong financial and operational judgment to budgeting, forecasting, and grants management.
• Partner with the Board on a cohesive, multi-year fundraising strategy grounded in the organization’s vision.
• Evaluate and ensure the financial viability of new initiatives, considering the organization’s evolving needs and priorities.
• Set policy priorities and collaborate with the Policy Director and Policy Manager to shape and implement impactful policy goals.
• Build relationships with funders, government officials, and community groups to advance key policy initiatives.
• Serve as chief spokesperson and ambassador with funders and partners.
• Ensure peer support programming aligns with evolving community needs and expand program visibility through effective communication strategies.
• Bridge peer support and policy work, building pathways for community engagement across the organization.

Requirements

• Deep commitment and connection to the mission of Generation Patient.
• Experience leading and developing a team; nurtures collaboration, accountability, and professional development.
• Demonstrated experience bringing in funding from both foundations and individual donors.
• Strong skills in policy analysis and understanding of complex policy and legal documents; background in health policy or patient advocacy is valued.
• Strong verbal and written communication skills; comfort representing the organization in one-on-one and group conversations, as well as presenting to larger groups.
• Analytic and problem-solving skills; ability to strategically align Generation Patient’s work according to community needs and the external environment.
• Able to work efficiently and independently as well as collaborate effectively with others.
• Proven emotional intelligence and conflict management expertise; strong interpersonal skills.
• Comfortable operating in a small, nimble organization and making confident decisions amid ambiguity.
• Experience with board member recruitment and engagement.
• Previous experience working with young adults.
• Location in or near the DC/Northeast region is a plus.

Work Environment

• Position is fully remote, based in 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.
• Sitting or standing at a desk, working with a computer, including many hours of screen time and virtual meetings.
• National travel 1-2 times a month for organizational and partner events, policy and fundraising meetings, and speaking engagements.
• Will require a background check for work with young people around sensitive topics.

Benefits

• Salary: $125,000–$140,000.
• Monthly healthcare stipend ($750) to support employees' medical coverage.
• Employer-paid dental, vision, and short-term disability insurance for employees.
• Paid time off, including vacation and sick/safe leave.
• Paid holiday schedule, including major federal holidays and year-end holidays.

Our Commitment to Diversity, Equity, & Inclusion

Generation Patient is an equal-opportunity employer. We value collaboration, respect, empathy, accountability, and independence. We encourage people who have been young adult patients themselves, those experienced with chronic and rare diseases, and/or those who have cared for people with chronic disease to apply.