JDRF’s Youth Engagement Strategy: Building the Next Generation of Diabetes Leaders

Type 1 diabetes (T1D) affects millions of children and young adults worldwide, making youth engagement not just beneficial but essential to progress. JDRF has long recognized that the young people living with T1D are not merely beneficiaries of research and advocacy—they are critical partners in driving change. By deliberately creating pathways for youth participation, JDRF ensures that the perspectives, talents, and energy of young people shape the future of T1D research, treatment, and policy.

Youth engagement within JDRF goes far beyond token representation. It involves structured programs that provide young people with real decision-making authority, hands-on research experience, and platforms to advocate for policies that directly affect their lives. This approach acknowledges that those who live with T1D daily possess unique insights that professional researchers and policymakers may lack. When young people actively participate, they bring urgency, creativity, and a personal stake that accelerates progress toward better treatments and ultimately a cure.

The Critical Importance of Youth Engagement in T1D Research

Engaging young people in diabetes research and advocacy produces outcomes that benefit both the individuals involved and the broader T1D community. Research consistently shows that youth participation in health advocacy leads to better health literacy, improved self-management skills, and greater long-term engagement with healthcare systems. For T1D specifically, youth engagement addresses several critical needs.

Fresh Perspectives Drive Innovation

Young people grow up immersed in technology, social media, and collaborative digital environments. They approach problems differently than previous generations, often identifying solutions that others overlook. When JDRF includes youth in research priority discussions, they gain access to ideas about technology design, clinical trial recruitment, and patient education that resonate with their peers. A teenager using a closed-loop insulin delivery system, for example, can offer feedback on user interface design that no adult engineer could replicate. This practical, lived-experience insight directly improves the usability and effectiveness of diabetes technologies.

Representation Ensures Relevance

T1D affects people across all age groups, but the needs of a 10-year-old differ significantly from those of a 40-year-old. Youth engagement ensures that research questions, clinical trial designs, and advocacy priorities reflect the specific challenges faced by children, adolescents, and young adults. Issues such as school accommodations, athletic participation, driving regulations, college campus support, and mental health resources for young people receive appropriate attention when youth voices are present in decision-making spaces. Without youth engagement, these critical concerns risk being overshadowed by the priorities of older adults with T1D.

Building a Sustainable Advocacy Pipeline

The fight against T1D requires sustained effort across decades. Youth engagement programs create a pipeline of informed, passionate advocates who will carry the work forward. Young people who participate in JDRF programs often continue their involvement as university researchers, healthcare professionals, policy advisors, and organizational leaders. This intergenerational continuity ensures that momentum does not stall and that institutional knowledge passes from one cohort to the next. JDRF’s investment in youth engagement today directly determines the organization’s effectiveness tomorrow.

JDRF’s Flagship Youth Engagement Initiatives

JDRF has developed a comprehensive portfolio of programs designed to engage young people at every stage of their development, from middle school through early career. These initiatives operate at local, national, and international levels, creating multiple entry points for youth participation.

Youth Advisory Boards: Structured Leadership and Input

JDRF’s Youth Advisory Boards (YABs) represent one of the organization’s most impactful engagement vehicles. These boards consist of teenagers and young adults living with T1D who meet regularly to provide direct input on JDRF’s research priorities, educational programming, and advocacy strategies. Unlike advisory structures that merely tokenize youth participation, JDRF’s YABs operate with genuine influence. Board members review grant proposals, consult on clinical trial design, and help shape public awareness campaigns.

Leadership Development and Training

Youth Advisory Board members receive structured training in leadership, public speaking, research methodology, and policy analysis. This training prepares them to participate effectively in meetings with researchers, elected officials, and healthcare executives. Many board members report that their YAB experience directly influenced their career choices, with numerous alumni pursuing degrees and careers in medicine, biomedical research, public health, and health policy. The skills gained through YAB participation transfer directly to academic and professional settings, creating lasting benefits for participants beyond their T1D advocacy work.

Networking and Mentorship Opportunities

Youth Advisory Boards facilitate connections between young people and established professionals in the T1D field. Board members interact with leading researchers, clinicians, and advocates at JDRF events and through dedicated mentorship programs. These relationships provide young people with career guidance, research opportunities, and personal support from individuals who understand the challenges of living with T1D. The mentorship component is particularly valuable for young people who may not have T1D role models in their immediate family or community.

Educational Programs and Peer Support Events

JDRF operates a robust calendar of educational events designed specifically for youth audiences. These programs go beyond basic diabetes education to provide deep dives into research advances, technology developments, and advocacy strategies. The educational curriculum covers topics such as continuous glucose monitor data analysis, insulin pump optimization, exercise and blood glucose management, and emerging therapies like immunotherapy and beta cell encapsulation.

Annual Youth Conferences and Summits

JDRF hosts regional, national, and international conferences that bring together hundreds of young people with T1D. These events feature keynote presentations from leading researchers, breakout sessions on specific T1D management topics, and structured networking activities. The conference format deliberately balances education with community building, recognizing that peer support is equally important as formal learning. Young people leave these events with practical knowledge about managing their diabetes and a renewed sense of connection to a larger community.

Webinar Series and Virtual Learning

Recognizing that not all young people can attend in-person events, JDRF maintains an ongoing series of webinars and virtual workshops. These digital programs cover topics such as navigating college with T1D, transitioning to adult healthcare, managing diabetes during athletic competition, and understanding clinical trial participation. The virtual format allows JDRF to reach youth in rural areas, those with scheduling conflicts, and those who prefer to learn in low-pressure environments. Recordings are archived and made available on demand, creating a library of educational content that young people can access at any time.

Peer-to-Peer Mentorship Networks

JDRF facilitates formal and informal mentorship connections between young people with T1D. Experienced youth mentors provide guidance to newly diagnosed individuals and those struggling with diabetes management. These relationships often develop into lasting friendships that provide ongoing emotional support. Peer mentorship has been shown to improve diabetes self-management outcomes, reduce feelings of isolation, and increase engagement with healthcare providers. JDRF trains peer mentors in active listening, boundary setting, and appropriate information sharing to ensure these relationships remain positive and productive.

Research Participation and STEM Pipeline Programs

JDRF actively encourages young people to participate in research as both subjects and contributors. This dual approach demystifies the research process while building the next generation of T1D scientists.

Clinical Trial Participation

JDRF educates youth and their families about the importance of clinical trial participation in advancing T1D research. The organization provides resources that explain what to expect during a clinical trial, how to evaluate participation risks and benefits, and how to find trials that are accepting participants. JDRF advocates for clinical trial designs that minimize burden on pediatric participants, including flexible scheduling, child-friendly environments, and age-appropriate consent processes. Youth who participate in clinical trials gain firsthand understanding of the research process that serves them well whether they pursue scientific careers or remain engaged as informed patient advocates.

Internships and Research Experiences

JDRF partners with academic institutions, biotechnology companies, and research hospitals to create internship opportunities specifically for young people with T1D. These internships place participants in laboratories, clinical research settings, and data analysis roles where they contribute directly to T1D research projects. The internship model recognizes that young people with T1D bring valuable perspective to research teams while simultaneously developing skills that prepare them for careers in STEM fields. Many JDRF internship alumni have gone on to publish research papers, present at scientific conferences, and pursue graduate education in T1D-related disciplines.

Science Fair and Competition Support

JDRF encourages youth participation in science fairs, innovation competitions, and research symposia focused on diabetes. The organization provides mentorship, supplies, and sometimes funding for young researchers developing projects related to T1D. These competitive experiences teach students how to formulate research questions, design experiments, analyze data, and communicate findings—skills that are essential for future scientists and advocates. JDRF also recognizes outstanding youth research through awards and scholarship programs that celebrate achievement and encourage continued pursuit of T1D research careers.

Youth Advocacy Training and Policy Engagement

Beyond research participation, JDRF trains young people to become effective advocates for policies that support T1D research funding, healthcare access, and diabetes management support. Advocacy training programs teach participants how to tell their personal stories compellingly, how to meet with elected officials and their staff, and how to build coalitions with other health advocacy organizations.

Children’s Congress and Capitol Hill Advocacy

JDRF’s Children’s Congress is one of the organization’s signature youth advocacy events. Every two years, children and teenagers from across the United States travel to Washington, D.C., to meet with members of Congress and advocate for continued federal funding for T1D research. These young delegates share their personal experiences with T1D, explain why research funding matters, and ask legislators to support specific policy priorities. The Children’s Congress has played a documented role in securing billions of dollars in federal research funding through the Special Diabetes Program. Youth delegates consistently report that participating in Children’s Congress transforms their understanding of how policy decisions affect their lives and empowers them to remain engaged in advocacy long after the event ends.

State-Level Advocacy and Local Policy Engagement

JDRF also trains young people to engage with state and local policymakers on issues such as school diabetes care policies, safe school staffing for insulin administration, insurance coverage for diabetes technology, and access to continuous glucose monitors in state Medicaid programs. Youth advocates testify at state legislative hearings, meet with school board members, and participate in media interviews to raise awareness about T1D issues. This grassroots advocacy builds political will for policies that directly improve the daily lives of young people with T1D. The skills youth develop through state-level advocacy—public speaking, strategic communication, coalition building—serve them throughout their personal and professional lives.

Measurable Impact and Demonstrated Outcomes

JDRF’s youth engagement initiatives have produced measurable results across multiple dimensions. The impact extends beyond individual participants to influence the broader T1D research and advocacy ecosystem.

Increased Youth Participation in Research

Since expanding its youth engagement programs, JDRF has documented significant increases in youth participation in clinical trials, research advisory activities, and advocacy events. Youth Advisory Board recommendations have directly influenced the design of several major clinical trials, including changes to eligibility criteria, recruitment strategies, and outcome measures that better reflect youth priorities. Research studies informed by youth input show higher enrollment rates and better participant retention compared to studies designed without youth consultation.

Policy Successes Driven by Youth Advocacy

Youth advocates trained through JDRF programs have contributed to numerous policy victories at federal and state levels. These include continued reauthorization and funding increases for the Special Diabetes Program, passage of state laws ensuring that students with diabetes receive necessary care at school, and expanded insurance coverage for continuous glucose monitors and insulin pumps. When youth advocates share their personal stories, policymakers consistently report being more moved to action than when hearing from professional lobbyists or adult advocates. The authenticity and urgency that young people bring to advocacy conversations creates a persuasive impact that cannot be replicated.

Career Pathway Outcomes

Longitudinal tracking of JDRF youth program participants reveals strong career outcomes. A significant percentage of alumni pursue education and careers in STEM fields, healthcare, and public policy. Many attribute their career direction directly to their JDRF program participation. The organization maintains an alumni network that facilitates ongoing connection and professional development. This network serves as a recruitment pool for JDRF staff positions, board service, and volunteer leadership roles, ensuring that the organization continues to benefit from youth perspectives as participants mature into professional leaders.

Psychosocial and Health Benefits for Participants

Participation in JDRF youth programs produces documented improvements in diabetes self-management, quality of life, and psychological well-being. Young people involved in advisory boards, conferences, and peer mentorship report reduced feelings of diabetes-related isolation, increased confidence in managing their condition, and greater willingness to use advanced diabetes technologies. These benefits represent meaningful improvements in daily life that complement the research and advocacy outcomes that JDRF tracks. For many participants, the community connection and sense of purpose they gain through youth engagement programs is as valuable as any policy victory or research advance.

Future Directions and Expansion Goals

JDRF continues to evolve its youth engagement strategy to reach more young people and deepen the impact of existing programs. The organization has articulated several priority areas for future expansion.

Global Reach and International Programs

While JDRF’s youth programs have primarily operated in the United States, the organization is actively expanding its international footprint. Youth advisory boards and educational programs are being piloted in Canada, Australia, the United Kingdom, and several European countries. JDRF is developing culturally appropriate program models that respect regional differences in diabetes care, educational systems, and advocacy environments while maintaining the core principles of youth empowerment and genuine decision-making authority. The goal is to create a global network of youth leaders who can share best practices and collaborate across borders on research and advocacy initiatives.

Digital Platform Expansion

JDRF is investing in digital tools and platforms that expand access to youth programs beyond those who can attend in-person events. This includes a dedicated youth portal with educational content, discussion forums, mentorship matching, and advocacy training modules. The digital platform strategy recognizes that many young people prefer to engage through online channels and that digital engagement lowers barriers related to geography, scheduling, and social anxiety. The platform will include accessibility features for young people with visual impairments, hearing loss, and other disabilities that are common among the T1D population.

Younger Youth Engagement

Most existing JDRF youth programs target teenagers and young adults. The organization is developing programming for younger children, including elementary school-aged children with T1D and their siblings. These programs focus on building foundational diabetes knowledge, positive identity development, and early comfort with healthcare self-management. Sibling inclusion recognizes that T1D affects entire families and that siblings of children with T1D face their own challenges and can become powerful advocates. Younger youth programming creates a pipeline that feeds into adolescent and young adult programs as participants age.

Research Participation Infrastructure

JDRF is working to create more structured pathways for youth to contribute directly to research as investigators, not just as subjects. This includes developing youth research training programs that teach rigorous methodology, funding mechanisms that support youth-led research projects, and publication outlets that accept youth research. The ultimate goal is to position young people with T1D as legitimate contributors to the scientific enterprise, not merely as beneficiaries of research conducted by others. This shift in how the research community views youth participation has the potential to accelerate progress by incorporating perspectives that have historically been excluded.

Sustaining the Momentum

JDRF’s commitment to youth engagement reflects a fundamental belief that young people are not just the future of T1D advocacy—they are its present. The organization’s programs provide young people with the knowledge, skills, connections, and platforms they need to drive change today while building capacity for sustained impact over the long term.

For young people with T1D seeking meaningful ways to contribute, JDRF offers multiple pathways to involvement. Whether through a local youth advisory board, participation in Children’s Congress, summer research internship, or peer mentorship program, there are opportunities at every age and interest level. The organization’s website provides detailed information about current youth programs, application deadlines, and contact information for regional program coordinators. JDRF also offers resources for parents, educators, and healthcare providers who want to support young people in their engagement journey.

The fight against type 1 diabetes requires sustained effort, innovative thinking, and passionate advocacy across generations. By investing in youth engagement, JDRF ensures that the voices of young people are heard, that their unique needs are represented, and that they are equipped with the tools and confidence to lead the charge toward a cure. The young people participating in JDRF programs today are not only improving their own lives and the lives of their peers—they are building a future where type 1 diabetes is no longer a lifelong burden but a condition that can be prevented, reversed, or cured. That future will be built by researchers, advocates, and leaders who first discovered their power and purpose through JDRF’s youth engagement initiatives.

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