Raregen

Youth Advocacy Mission: Empowering the Next Generation

RareGen’s Youth Advocacy Mission is the cornerstone of our work, designed to empower young individuals globally to take charge of the rare disease narrative. By providing the tools, platforms, and mentorship necessary for impactful advocacy, this program ensures that youth voices resonate across local, national, and global arenas.

Global Youth Chapters: A Network for Change

RareGen’s youth chapters are the lifeblood of the advocacy mission. These chapters, established in communities worldwide, function as vibrant hubs of activity, innovation, and impact.

What Do the Chapters Do?

Advocacy Efforts

  • Chapters collaborate with local and national policymakers to advocate for rare disease awareness and equitable healthcare policies.

  • They organize campaigns to educate communities about rare diseases, debunk myths, and highlight the urgent need for better treatments and resources.
  • Awareness Campaigns

  • Hosting educational events in schools, community centers, and healthcare institutions to foster understanding and empathy.

  • Leveraging social media to create viral campaigns, spreading the message far and wide.
  • Fundraising Initiatives

  • Youth-led drives to support international projects, such as post-transplant medication donations for underserved regions.

  • Partnering with local businesses and organizations to fund specific advocacy programs or community needs.
  • Grassroots Innovation

  • Chapters encourage members to brainstorm and implement creative solutions to challenges faced by the rare disease community.

  • This includes designing innovative awareness tools, such as digital infographics, interactive workshops, or local events.
  • Leadership Development

  • Members gain hands-on experience in advocacy, public speaking, project management, and collaboration, grooming the next generation of rare disease leaders.
  • Global Map of Active Chapters

    RareGen’s impact is amplified through its growing network of youth chapters, spread across the globe. These chapters work independently while being unified under the RareGen mission, sharing resources, strategies, and successes.

    Interactive Map Features

    Interested individuals can fill out a form to connect directly with RareGen’s leadership team for guidance and resources.

    Expanding the Advocacy Mission

    RareGen’s vision is to establish chapters in every major region of the world, ensuring that no young advocate or patient feels isolated. By nurturing this global network, RareGen transforms advocacy into a powerful collective movement.

    How RareGen Supports Its Chapters

    Resources and Training

  • Advocacy toolkits, educational materials, and online workshops are provided to every chapter.
  • Specialized training sessions on topics like public speaking, policy drafting, and community organizing.
  • Regular Communication

  • Monthly inter-chapter calls to share updates, celebrate achievements, and strategize future goals.
  • A centralized platform for collaboration, enabling chapters to exchange ideas and resources.
  • Mentorship Opportunities

  • Chapters are paired with experienced advocates, healthcare professionals, and RareGen board members for guidance.
  • Access to global conferences and events, allowing members to represent their chapters on international stages.
  • Why Join or Start a Chapter?

    Empowerment

    RareGen chapters give young advocates a sense of purpose and belonging, allowing them to make a tangible difference.

    Connection

    Members join a global community of passionate peers, building friendships and networks that last a lifetime.

    Impact

    By engaging with local leaders, organizing events, and participating in global initiatives, chapters drive change that improves lives.
    The Youth Advocacy Mission embodies RareGen’s core values of youth leadership, collaboration, inclusivity, and innovation. Through its vibrant network of chapters, RareGen is cultivating a generation of empowered advocates ready to transform the rare disease landscape, one chapter at a time.