Making Diagnosis, Research & Treatments Possible for All
A world where no family with an undiagnosed or ultra-rare condition has to fight alone for a diagnosis, research, treatment or support.
Let's make the impossible possible:
A diagnosis for every undiagnosed patient.
A research strategy for every newly discovered disease.
Treatment options for everyone.
One-on-one support every step of the way!
The UDNF collaborates closely with the Undiagnosed Diseases Network (UDN) to advance patient-centered research and clinical care, enabling undiagnosed patients and families to get the answers they desperately need. We envision making the diagnosis, research, treatment and support of undiagnosed and ultra-rare diseases more accessible, equitable, accurate, and efficient.
The UDNF's approach to funding patient-centered research is designed to accelerate the pace of discovery for undiagnosed diseases and the development of treatments for ultra-rare diseases by:
- Equitable access to research: We will support research that is accessible to patients and families from all backgrounds. Through community-based research, subsidy of patient expenses, and engagement with patients and families in the research process, the UDNF will foster an atmosphere where individuals from varied backgrounds are empowered to contribute to, and benefit from, scientific advancements.
- Accelerating translational research: We will fund projects that ensure research studies are conducted in conjunction with clinical care, bridging the gap between scientific discovery and direct patient benefit. This integration will help expedite the translation of research findings into clinical practice, bringing them from the bench to the bedside and facilitating the timely identification of novel diagnostic methods and treatment options.
- Strengthening the research infrastructure: We will support the development of a network of research sites that transcends the boundaries of fragmentation that have traditionally hindered collaboration among researchers. By supporting collaboration among centers, the UDNF will foster a dynamic environment where researchers can pool their expertise, resources, and data, creating a pipeline for undiagnosed and ultra-rare conditions.
- Investments in advancing new technologies: We will invest in new technologies that have the potential to revolutionize the way we study undiagnosed and ultra-rare diseases. This could include technologies such as gene editing, artificial intelligence, and synthetic biology.
- Coordinated, integrated patient evaluation and follow-up: We will support research studies that incorporate both clinical and research tools to maximize the benefits of the research and to the patients and families who make it possible. This could include studies that use patient-owned data, such as genomic data, to identify new diagnostic markers and treatments.
- A tiered, transparent set of resources: We will support a tiered system of research resources that provides efficient review and recommendations for all patients seeking diagnosis, with increasing resources based on need. This could include a system that prioritizes patients with rare or complex conditions, or patients who have not responded to traditional treatments.
Your donation to the UDNF will make a real difference in the lives of patients with undiagnosed and ultra-rare diseases. Your gift will help us to:
Uncover the underlying mechanisms of undiagnosed and ultra-rare diseases.
Develop new diagnostic methods and treatments.
Improve the quality of life for patients and families.
Thank you for your support. Together, we can make a difference.