Global Genes Statement on Current State of Affairs, Research Funding, and Federal Agency Impacts on Rare Disease

In times of change and uncertainty, it is especially important for individuals and families in the rare disease community to know they have unwavering support. At Global Genes, our first priority is—and always will be—serving as an ally, advocate, and trusted resource for everyone impacted by a rare disease.

We recognize that shifting policies in the United States and impacts on research funding and federal agencies may create added challenges and concerns for patients, caregivers, and our broader rare disease community. Global Genes remains committed to empowering and equipping rare disease patients and families by:

• Providing Resources and Education: We strive to ensure all individuals receive credible, up-to-date information about treatments, research developments, and patient support services.
• Facilitating Meaningful Community Connections: Our events, online platforms, and one-on-one outreach help unite patients, caregivers, and advocates. Sharing experiences and knowledge can spark hope and resilience during difficult periods.
• Offering Ongoing Guidance and Support: Whether newly diagnosed or years into the journey, patients and families can rely on Global Genes to connect them with tools, expert insight, and compassionate care.

Now More Than Ever, We Need Leadership in Rare Diseases

Rare disease often thrusts individuals and families into roles they never anticipated. Whether advocating for themselves or a loved one, navigating healthcare, or creating change within your community, leadership becomes essential. To cultivate and strengthen the next generation of rare disease advocates and leaders, Global Genes is committed to fostering leadership among the rare disease community. This year, the Global Genes’ Rare Advocacy Exchange is a key opportunity for you to develop strategic plans, hone leadership skills, and form collaborations that help shape the future of rare disease support and innovation. By bringing together experts, advocates, and peers, the Rare Advocacy Exchange equips participants to navigate uncertain conditions and champion the needs of our community effectively. We invite you to learn more about the Rare Advocacy Exchange at globalgenes.org/rare-advocacy-exchange. 

Working together, we can stay agile in the face of evolving circumstances, ensuring that our collective voice continues to drive meaningful change for rare disease patients and caregivers everywhere.

For more information or to connect directly with our team, please visit GlobalGenes.org. We are here to support your journey—every step of the way.

United in purpose, we remain committed to empowering every voice in the rare disease community—even in times of transition.