THE N 1 COLLABORATIVE INC

Programs

1. In 2025, the organization launched two openly accessible databases to serve patients, families, researchers, and clinicians working in the individualized medicine space. The gene registry catalogs n-of-1 projects, assessed variants, and marketed genetic therapies, providing a centralized resource to advance awareness and knowledge-sharing across the individualized medicine field. The connections platform enables peer-to- peer networking across the rare disease community, linking patients and families with one another as well as with researchers and clinicians working on relevant conditions, and has grown to more than 400 community members since its launch. Both platforms are designed to reduce the information and isolation barriers that characterize ultra-rare disease. The ultimate beneficiaries are patients with ultra-rare genetic conditions and their families, who gain access to critical scientific information and a community of individuals and experts who can support their path toward treatment.

   $72,653 spent
   40% of program spending

2. The organization hosted its annual meeting and a series of virtual seminars in 2025, each reaching between 100 and 200 participants across the individualized medicine ecosystem including researchers, clinicians, patient advocates, industry representatives, and families of affected patients. Events featured speakers, panels, and workshops focused on best practices, community updates, and field-wide strategy for advancing individualized medicines for ultra-rare genetic conditions. By convening cross-sector stakeholders in both in-person and virtual formats, n1c's conferences and seminars accelerate knowledge exchange, foster collaboration, and build the shared infrastructure needed to make individualized treatments more routinely and rapidly accessible to patients.

   $64,432 spent
   36% of program spending

3. The organization convenes open, cross-disciplinary workgroups that bring together researchers, clinicians, and rare disease stakeholders to develop shared frameworks and consensus resources for the individualized medicine field. In 2025, the workgroups program produced consensus guidelines for assessing the eligibility of pathogenic dna variants for antisense oligonucleotide (aso) treatments. Workgroups and their outputs are openly accessible to the broader rare disease community, reaching more than 1,000 community members including researchers, clinicians, and patient advocates. The ultimate beneficiaries are patients with ultra-rare genetic conditions, who gain access to better-informed clinicians and researchers equipped with shared standards to evaluate and advance individualized treatment options.

   $43,592 spent
   24% of program spending

The 3 programs described on its FY2025 Form 990, listed largest first by expense. Program spending in total: $180,677.