Vision Statement
RareGen envisions a world where every young voice has the power to transform the narrative of rare diseases, ensuring that no individual feels invisible or unsupported. We aim to create a globally connected community that thrives on understanding, collaboration, and advocacy. Our vision is to build a future where innovation and equity in rare disease research, awareness, and care empower all individuals to lead enriched lives.
Core Commitments
RareGen, a youth-led organization, unites passionate young voices worldwide to advocate for transformative change within the rare disease community. We amplify youth perspectives to address the unique challenges of rare diseases, fostering a global ecosystem of collaboration among advocates, researchers, and policymakers. Through initiatives in education, peer support, and resource distribution, RareGen empowers youth to influence legislation, advance medical research, and provide critical support to underserved populations. Our mission is to ensure that every individual impacted by rare diseases is heard, valued, and equipped to thrive.
Mission Statement
Through these pillars, RareGen transforms advocacy into action, building a movement that transcends borders and inspires lasting change in the rare disease community.
Youth-Led Advocacy
Mobilizing young leaders to shape local and global policies that enhance rare disease awareness and improve outcomes.
Support Networks
Creating peer-to-peer connections for emotional and social empowerment among youth living with rare diseases.
Global Outreach
Delivering essential medical resources and support to underserved communities, with a current focus on post-transplant care in rural areas.
Innovation in Research
Partnering with medical institutions to integrate youth experiences into groundbreaking research and treatment developments.
Education and Awareness
Developing programs to educate communities and professionals on rare disease challenges, fostering understanding and inclusivity.