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[Global strategy for rare and intractable diseases].

Tomoko Kawashima Kodama1

  • 1Department of International Health and Collaboration, National Institute of Public Health.

Rinsho Shinkeigaku = Clinical Neurology
|December 3, 2013
PubMed
Summary

Global networks advance rare disease research, but Japan needs a standardized patient registry and stronger collaboration for effective treatments. This improves patient quality of life (QOL).

Area of Science:

  • Rare and intractable diseases research.
  • Global health policy and rare disease management.

Context:

  • International efforts and national policies have advanced rare disease research and patient care.
  • Japan has a long-standing national strategy for rare diseases since 1972.
  • Global initiatives like Orphanet facilitate collaboration among stakeholders.

Purpose:

  • To highlight progress in rare disease research and treatment development.
  • To identify the need for enhanced global collaboration and standardized systems in Japan.
  • To emphasize the importance of integrated strategies for rare disease management.

Summary:

  • Significant progress in rare disease research is attributed to global networking.
  • Japan's integrated strategy since 1972 includes research, facilities, cost reduction, and QOL improvement.

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  • Global collaboration and standardized patient registration are crucial for developing new treatments.

    • Impact:

    • Improved treatment and care for patients with rare and intractable diseases.
    • Strengthened international cooperation in rare disease research and drug development.
    • Enhanced patient quality of life (QOL) through comprehensive healthcare strategies.