Generation Patient is seeking its next Executive Director. Read on to hear from our Board and Founder and Executive Director Sneha Dave, and to learn more about the requirements of this position.
Letter from Generation Patient’s Board of Directors
January 6, 2026
To the Generation Patient community:
Today, Generation Patient announces that, after 13 years of extraordinary leadership, our founder, Sneha Dave, is stepping down as Executive Director of the organization in July 2026. Sneha is leaving this role to pursue law school in August 2026 and will continue her service to Generation Patient as a dedicated member of our Board.
As a Board, we want to express our deepest gratitude to Sneha for her vision, leadership, and tenacity, which have shaped Generation Patient from a grassroots idea into a global force for young adult patients. Because of Sneha’s commitment to our community and her relentless drive to build pathways she wished she had when she was younger, Generation Patient has become the go-to organization for young adults with chronic and rare conditions seeking both community and opportunities to advocate for themselves.
Through Sneha’s leadership in partnership with dedicated staff, the organization has:
Facilitated over 650 peer-support meetings since 2020, creating spaces for young adults navigating the daily realities of chronic illness.
Advanced national policy change, including work on patent reform, clinical trial representation, and federal legislation to address deceptive pharmaceutical advertising on social media.
Expanded the Health Policy Lab and Scholars Program, equipping young adult leaders to shape testimony, regulatory comments, and national conversations about drug pricing, access, and equity.
Spearheaded peer-reviewed publications, all of which have been first-authored by a young adult patient, setting a new standard for community-led research as both a method and a practice.
Shared insights and patient leadership on prominent national stages, including the White House, FDA workshops, major research conferences, and leading health policy forums.
We are honored to have partnered with Sneha on these key wins. She provided an entire movement of young adult patients with the skills and opportunities they need to provide a better future for themselves and others. She leaves the Executive Director role with our appreciation and a sense of pride for all that we have accomplished together.
Over her years of leadership, Sneha prioritized building a resilient organizational infrastructure and a thoughtful succession pathway that prioritizes whole-person health and well-being. She simultaneously cultivated a broad network of supporters from peer organizations to institutional funders and policymakers who champion our work and values. These investments in our internal systems and external relationships have strengthened the organization’s long-term stability, and we are proud to share that Generation Patient enters this transition in strong organizational and financial health. We have full confidence in the staff and the structures in place to support a seamless transition.
The Board of Directors is fully engaged in the search for Generation Patient’s next Executive Director. We are looking for someone who is passionate about our values and community, eager to build on our progress, and has the necessary experience to strategically guide the organization into its next decade of impact. We seek someone who is responsive to the shifting health policy landscape and who will stand firm in their commitment to health equity and justice. Our goal is to have someone onboarded before Sneha departs to ensure continuity in leadership, with a preference for a start date in April 2026.
We are pleased Sneha will remain on the Board and know her insights and institutional knowledge will continue to be invaluable. We look forward to entering this next chapter of Generation Patient alongside you. Thank you for believing in the power and potential of young adult patients.
With gratitude,
The Board of Directors of Generation Patient
Barbara Bierer, MD
Keely Cat-Wells
Leah Clark, M.S.E
Stephen Plank, PhD
Letter from Sneha Dave, Founder and Executive Director
Dear Generation Patient community, friends, partners, supporters, allies, and everyone in between:
2026 represents thirteen years of building Generation Patient. Of course, in the beginning, this was not “Generation Patient,” the full-fledged organization it is today with staff, community members, and funders. In its inception, it was simply an idea to bring young people navigating life with the same chronic conditions I lived with together. It was an idea I had so that I could feel a little less alone, and hopefully, so others could too. Most days, building this was all that I could think about.
I still vividly remember my best friend, Cory Lane, visiting me in the hospital room after my colectomy surgery when we were both just 13. At the time, I was not aware that his osteosarcoma was terminal, and that I would lose what was then my only true friend. However, I was aware that young people entering adulthood with lifelong health conditions needed community and guidance on what it could look like to thrive into adulthood. When Cory passed at the same time my health issues flared up, I did not receive insights into how to juggle the loss of my best friend, how to navigate college friends, and my future, outside of my diagnosis. Navigating this alone inspired me to create a reality in which we, as young patients, receive the holistic care needed and feel empowered to drive systemic change.
Generation Patient was founded on my experience, but it reflects the untold stories of millions of young adult patients. Each and every person I have met since founding Generation Patient has shaped this organization. I have made many great decisions and equally many not-so-great ones – I have learned from both. I have grown as a leader, a student, a friend, and a daughter. I have created a community that has far surpassed my dreams of impact and grown in ways I could not have expected. I have you all to thank for this incredible journey, and with the start of new beginnings in 2026, I want to say thank you a million times over.
As always, nothing lasts forever, so today I announce my transition out of Generation Patient mid-2026. However, what is not coming to an end is my resolute commitment to this organization and the young adult patients we proudly serve. Generation Patient is not centered on me or any one person but rather on the experiences of far too many young adult patients who have endured a relentless cycle of uncertainty. It is time for the organization to grow outside of my leadership, and I am excited to hand over the reins to someone who embodies the spirit of our community. I am also excited to lead in a different capacity by being an active part of the board of directors, where I will remain as a pillar of support for the new Executive Director, the current staff, and the broader community.
It is the greatest privilege of my life to carry the stories, friendships, and wisdom to my next chapter. There are countless memories that make me smile, many of which come from watching this community of young adult patients thrive and grow. It makes me beam with pride to see young adult patients serve as peer support facilitators, advocate for fairer policies on the Hill, and become leaders in the fight for a better now and a better future. They are leading the way. I am proud of the over 650 peer support meetings led by our team at Generation Patient, our work in driving policy, and our staunch refusal to accept private healthcare industry funding.
Generation Patient was proudly created by young adult patients for young adult patients, and we have accomplished so much with that ethos. With that being integral to our organization’s DNA, I look forward to seeing an even fiercer version of Generation Patient emerge. I am confident that this version of the organization is only the beginning stages towards the full realization of our shared vision: one in which global systems ensure all young adult patients have the opportunity to thrive.
My greatest wish as I transition is that you will continue to support and celebrate the growth of Generation Patient’s impact on young adults with chronic conditions. Generation Patient is more than one person or a handful of people; it is every young adult patient who is faced with a chronic condition. You support all of us by supporting this organization.
As for me, I will be starting law school this fall and wrapping up my role as Executive Director tentatively at the end of June. We will commence a search for a new leader imminently, and I will work closely with the board over the next several months to find an extraordinary leader to pass the torch to. I am both excited and nervous, yet confident that this is the right next step for Generation Patient and our greater impact. The organization is past its start-up phase: we have top-of-the-line staff, a committed board, strong institutional support, and deep peer organization and policymaker relationships - all things that have set the organization up for long-term success. I will continue to advocate for young adult patients and the policies that benefit us and I look forward to serving on the board of directors. I eagerly anticipate what next year brings for Generation Patient, as I know it will be nothing short of amazing.
Thank you for bringing my idea to build a deep-rooted community for young adult patients to fruition, and for your relentless support and belief in me over the years.
With deep gratitude,
Sneha Dave
Job Description: Executive Director, Generation Patient
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.
How to Apply
Please email edsearch@generationpatient.org with the following attached in one file:
CV
Cover letter detailing your interest specifically in the role
3-4 references. One reference should be from a funder.
Screening Questions: Please read carefully before submitting your responses. For each question, candidates must confirm that they meet the experience requirements. In addition, please provide no more than two to three sentences with brief details or examples that demonstrate your relevant experience. Responses should be concise and directly address the question. Please provide responses to the screening questions in the email body. Thank you for your attention to these guidelines and for your interest in Generation Patient!
Do you have senior leadership experience, including directly supervising full-time staff, part-time staff, and/or consultants?
Do you have direct fundraising experience, including cultivating and managing relationships with individual donors and/or institutional funders?
Do you have experience working in public health?
We prioritize applications that come in as soon as possible. The priority deadline to apply for this position is Monday, January 26. We will accept applications on a rolling basis and until the position is filled.
We anticipate that the start date for this position will be either April or May 2026.
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.