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
Remote
Salary: $125,000 - $140,000
The Organization
Generation Patient represents the 25 million+ young adults with chronic and rare conditions. 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. 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, with an initial focus 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 (i.e., lupus, arthritis, sickle cell, diabetes, epilepsy, among others). Today, Generation Patient, with an annual budget of $750,000, is supported by four staff members and 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. Generation Patient's advocacy is pragmatic and evidence-based, working across the political spectrum to advance policy solutions. With strong foundation support, 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.
The Position
Generation Patient is at a pivotal transition point as its founder moves out of the Executive Director role. The organization seeks its next Executive Director to bring it into a new phase of impact. The Executive Director 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.
Partnering with the Board of Directors, the Executive Director will act as the organization’s primary external spokesperson, fundraiser, and advocate. They will be responsible for leading Generation Patient’s programs and policy work, and will oversee 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 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.
Role Overview
Strategy & Organizational Leadership: 30%
Collaborate with Board, staff, and others to cultivate an environment that upholds Generation Patient’s mission, which is rooted in its dedication to inclusive, accessible standards of operation and an ongoing pursuit of 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 responsibility and closing gaps.
Support board recruitment, development, and governance.
Maintain financial oversight and ensure compliant operations, including annual budget and audit.
Fundraising & Sustainability: 30%
Lead funder engagement and stewardship efforts, diversifying philanthropic support through multi year foundation partnerships and the establishment of an individual giving strategy.
Bring strong financial and operational judgement 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 financial viability of new initiatives, considering the organization’s evolving needs and priorities.
Policy & External Relations: 30%
Set policy priorities and collaborate with the Policy Director and the Policy Manager to shape and implement impactful policy goals.
Build relationships with funders, government officials, and community groups to build support and partnerships and to advance key policy initiatives.
Serve as chief spokesperson and ambassador with funders and partners.
Programs Oversight: 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
The Ideal Candidate
The ideal candidate for the Executive Director position possesses the following competencies
Drives Vision & Purpose: Painting a compelling picture of the vision and strategy that motivates others to action.
Manages Ambiguity: Operating effectively, even when things are not certain, or the way forward is not clear.
Resourcefulness: Securing and deploying resources effectively and efficiently.
Balances Stakeholders: Anticipating and balancing the needs of multiple stakeholders.
Action Oriented: Taking on new opportunities and tough challenges with a sense of urgency, high energy, and enthusiasm.
Financial Acumen: Interpreting and applying understanding of key financial indicators to make better decisions.
What we are looking for:
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 nice-to-have.
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
National travel 1-2 times a month for organizational and partner events, policy, and fundraising meetings, speaking engagements.
Work Authorization/Clearances
Will require a background check for work with young people around sensitive topics.
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.
Compensation and Benefits
Salary: $125,000-$140,000
Benefits:
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
Timeline and Next Steps
If you are interested in this position, please click here. All applicants will receive an email confirming receipt of their application.
We encourage candidates of all backgrounds to apply even if you do not meet all of the qualifications outlined above. If you are selected to move forward for an initial screening call, we expect you to hear from us by September.
For questions: please contact Jessica Black, Senior Consultant at jblack@drgconsulting.com or Merav Schwartz, Consultant, at mschwartz@drgconsulting.com.