Core Values of RareGen
At the heart of RareGen lies a set of guiding principles that define who we are, what we stand for, and how we aim to create a lasting impact. These core values—youth leadership, collaboration, inclusivity, and innovation—are the foundation of our mission to unite and empower young voices in the rare disease community.
Youth Leadership
RareGen was founded by youth, for youth, with a steadfast belief that young voices have the power to drive meaningful change.
- Empowering the Next Generation: RareGen equips young people aged 12-21 with the tools, knowledge, and confidence to become leaders in advocacy, research, and community-building. From organizing local chapters to influencing global health policies, our programs nurture the leadership potential of every participant.
- Representation in Action: Youth are at the forefront of every RareGen initiative. By highlighting the experiences and perspectives of young individuals living with rare diseases, we demonstrate the unique insights that only they can bring to the table.
- Mentorship and Growth: Through collaboration with experienced advocates, healthcare professionals, and policymakers, RareGen provides young leaders with mentorship opportunities that prepare them to tackle the complexities of the rare disease space with courage and creativity.
Collaboration
RareGen thrives on building bridges—between people, organizations, and communities—to amplify our collective impact.
- Global Chapters and Networks: RareGen’s chapters serve as dynamic hubs for collaboration, bringing together young advocates, patients, healthcare providers, researchers, and allies. This grassroots approach ensures that every voice is heard and every idea explored.
- Partnerships for Progress: RareGen partners with established organizations such as NORD, Global Genes, and the Children’s Liver Foundation to pool resources, share knowledge, and amplify impact on an international scale.
- Interdisciplinary Approach: By connecting youth with researchers, clinicians, and policymakers, RareGen fosters a multidisciplinary dialogue that drives innovation in rare disease advocacy and care.
Inclusivity
RareGen is committed to creating a movement that values and celebrates diversity, ensuring that every individual, regardless of their background or condition, feels seen, heard, and supported.
- A Global Perspective: RareGen’s initiatives reach across borders to include underserved communities in rural and developing regions. By addressing disparities in healthcare access, we ensure that support and advocacy extend to those who need it most.
- Elevating Marginalized Voices: RareGen actively includes youth with different cultural, economic, and medical experiences, recognizing that diverse perspectives strengthen our advocacy efforts and lead to more equitable solutions.
- Peer-to-Peer Support: Our international support networks connect youth with rare diseases to others facing similar challenges, fostering a sense of belonging and solidarity. This inclusive environment helps combat the isolation often felt by rare disease patients.
Innovation
RareGen embraces forward-thinking approaches to solve the unique challenges faced by the rare disease community.
- Youth-Driven Research: By integrating the lived experiences of youth with rare diseases into medical research efforts, RareGen catalyzes advancements in understanding and treating these conditions. This innovative model bridges the gap between patients and researchers.
- Creative Advocacy Strategies: RareGen uses modern tools, from digital campaigns to storytelling platforms, to spread awareness and advocate for change. Our approach ensures that the rare disease community’s voice is amplified in a fast-paced, information-driven world.
- Adaptable Solutions: From addressing local needs through chapter-based initiatives to implementing international distribution projects like post-transplant medication donations, RareGen is unafraid to think outside the box to make a tangible difference.
How These Values Shape RareGen
RareGen’s core values are not just aspirational—they are embedded in everything we do. Our focus on youth leadership ensures that the voices of those directly impacted by rare diseases remain at the center of our mission. Collaboration amplifies our reach and effectiveness, while inclusivity guarantees that no one is left behind. Innovation propels us forward, enabling us to address challenges with fresh perspectives and actionable solutions.
By staying true to these principles, RareGen is more than a nonprofit; it’s a movement that inspires change, drives progress, and uplifts those who need it most. These values guide us as we strive to create a world where every voice is empowered, every challenge met, and every individual living with a rare disease supported to thrive.
