24 Feb Statement on Rare Disease Day, Research and Funding

February 24, 2025

The Undiagnosed Diseases Network Foundation (UDNF) recognizes the disappointment and concern caused by the cancellation of FDA-NIH Rare Disease Day 2025.  For the ultra-rare and undiagnosed disease community, this event has long been an opportunity to raise awareness, connect with experts, and advocate for meaningful change.

While this cancellation presents a challenge, it does not stop the momentum of our collective advocacy efforts. UDNF remains dedicated to ensuring that individuals and families affected by ultra-rare and undiagnosed diseases continue to have a voice in research, policy, and healthcare innovation.

The Impact of Changing Research Funding and Federal Priorities

Recent shifts in research funding and federal policy priorities may introduce additional barriers to the progress of ultra-rare and undiagnosed disease research. However, UDNF is committed to:

Driving Research and Scientific Collaboration: We continue to support efforts that accelerate discovery and improve diagnostic pathways for ultra-rare and undiagnosed diseases.

Advocating for Access to Diagnosis and Treatment: Through our Patient Navigation Program, we provide direct guidance and resources to individuals and families.

Pushing for Policy and Awareness Initiatives: Advocacy remains at the forefront of our work. Members of the UDNF team are in Washington, D.C. this week, meeting with legislators to ensure that ultra-rare and undiagnosed patients are not left behind. We are committed to securing continued research funding and policy advancements that improve access to diagnosis, care, and treatment.

Accelerating Scientific Discovery and Collaboration: We continue to support research efforts aimed at uncovering the causes of ultra-rare and undiagnosed conditions, bridging gaps in knowledge, and connecting research with the patient community.

Advocating for Equitable Access to Diagnosis and Treatment: Through our Patient Navigation Program, we provide direct support to individuals seeking answers, ensuring they have access to the resources and expertise necessary to move forward in their diagnostic journey.

Advancing Policy and Awareness Initiatives: Our advocacy work remains a top priority. Our team remains hopeful about the impact our community can still have on Capitol Hill this week alongside our partners at the EveryLife Foundation for Rare Diseases.

Now More Than Ever, We Must Take Action

The cancellation of Rare Disease Day 2025 does not diminish the urgency of our mission. If anything, it reinforces the need for consistent advocacy and a unified community pushing for progress. UDNF remains committed to:

• Delivering Credible Information and Support: We will continue providing patients, caregivers, and advocates with the latest updates on research, treatments, and policy developments.
• Strengthening Community and Connection: Through patient stories, collaborative initiatives, and shared experiences, UDNF ensures that individuals and families remain supported and empowered.
• Driving Policy and Research Investments Forward: We will advocate for sustained research funding and policies that prioritize the needs of those with ultra-rare and undiagnosed diseases, ensuring that these communities are not overlooked.

A Call to Action for the Ultra-Rare and Undiagnosed Community

While events may be canceled, the mission continues. We encourage patients, caregivers, researchers, and advocates to remain engaged.

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