Vision:

  • A future where every individual and family affected by Tubulinopathies is supported by strong science, inclusive advocacy, and a connected network of experts, organizations, and communities.

  • To build a unified national community with an international platform for advancing understanding, innovation, and support for all Tubulinopathies by empowering families, strengthening organizations, and accelerating research through shared purpose and collective action.

Mission:

Our mission is to unite individuals, families, advocacy groups, clinicians, and researchers to:

  • Pool scientific, self-advocate, and family expertise across rare Tubulinopathy conditions

  • Equip families, individuals, and providers with clear, accessible tools to understand and communicate about this family of neurodevelopmental conditions

  • Identify and advance shared goals in research, infrastructure, and treatment development, and policy advocacy

  • Foster interdisciplinary connections spanning basic science, clinical innovation, and educational outreach

  • Strengthen each organization and community through coordinated national efforts, with an international voice