Global Genes Impact Report: Building on a Successful 2022

April 12, 2023

To our community members:

The year 2022 was a significant one for the rare disease community as we’ve seen great progress in the ability to diagnose and treat rare conditions. It was also a momentous year for Global Genes itself, which completed its merger with the rare disease data platform provider RARE-X, positioning the combined organization to focus on next-generation advocacy.

I am pleased to share the Global Genes Annual Impact Report 2022. This offers an overview of the many ways that our organization has touched the lives of members of the rare disease community last year through our programs, events, and publications.

Through these efforts, we support and empower communities to drive progress, connect people to resources and communities, and share insights to support innovation. We are also working to ensure equitable participation in research, development, and advocacy.

View the Global Genes 2022 Impact Report

This is a transformational time for members of the rare disease community as technology is enabling rare disease patients and advocates to drive research in ways that were unimaginable a decade ago. No longer are they passive participants in the research process but they are actively leveraging their data to advance research, funding translational science, and crafting comprehensive research agendas.

Next generation advocacy requires expanded support. Global Genes is taking a three-pronged approach to meet the needs of rare disease advocates today. This is built around support for patients and developing communities, education, and research and development including data enablement. The integration of these essential services will provide both newly diagnosed patients and veteran members of the rare disease community with essential tools and resources to take an active role in changing what it means to live with a rare disease.

With Hope,

Charlene Son Rigby
CEO, Global Genes  

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