N=1 Collaborative
N=1 Collaborative is a 2021-founded nonprofit professional society convening researchers, clinicians, patients, regulators, and industry to advance individualized genomic medicines for ultra-rare diseases via its Connections platform, Gene Registry, workgroups, and annual meeting.
- Company typePrivate
- Founded2021
- HeadquartersSomerville, United States
- Headcount1–10
- GTM typeB2B and B2C
- OfferingServices
What N=1 Collaborative does
N=1 Collaborative (N1C) is a 501(c)-style nonprofit professional society founded in 2021 and headquartered in Somerville, Massachusetts, that serves as the convening body for the individualized genomic medicine field targeting ultra-rare and neurogenetic diseases. The organization operates the Connections platform as its central digital hub, complemented by specialized tools and programs including the Gene Registry (catalog of individualized therapy programs, marketed gene therapies, and assessed variants), N1C VARIANT (eligibility assessment tool for antisense oligonucleotide treatment), the Donated Resource Center, a Seminar Series, the 'Fireside Chats in Individualized Medicine' podcast, eight cross-sector workgroups (Patient Identification, Preclinical Design, Manufacturing, Institutional Implementation, Clinical Outcomes, Regulatory, Data Coordination, and Access & Funding), and an Annual Meeting. Founding support came from the Oligonucleotide Therapeutics Society N-of-1+ Taskforce and the Chan Zuckerberg Initiative, with a founding committee led by Dr. Tim Yu (designer of milasen, the first individualized ASO) and Julia Vitarello (Mila's mother).
N1C monetizes through three streams: (1) recurring membership fees that unlock exclusive Connections spaces, patient and research community engagement, virtual streaming of the Annual Meeting, and recording access; (2) sponsorships and the structured Corporate Alliance program, which let mission-aligned companies co-create shared infrastructure; and (3) tiered Annual Meeting registration ($295 industry, $180 academic/nonprofit, $120 trainee, free for parents and families). Membership pricing is gated behind platform registration and is not publicly disclosed. Customer segments span five stakeholder groups — researchers and drug developers, clinicians, patients/families/advocates (primary), plus industry/corporate partners and regulators (secondary) — with no single segment generating concentrated revenue.
The organization has facilitated treatment of more than 80 patients with over 30 individualized ASOs since the milasen precedent, and in 2025 the first personalized CRISPR-based therapy was designed, approved, and delivered in six months. Strategic positioning has been reinforced by participation in the One to Millions global public-private initiative (with Critical Path Institute, n-Lorem Foundation, Mila's Miracle Foundation, and Boston Children's Hospital, announced March 2026) and active alignment with the FDA's Plausible Mechanism Framework and the UK's rare therapies guidance. Nicole Nolen, the organization's first hire in 2022, was appointed Executive Director in June 2026, marking a transition from founder-led to executive-managed operations.
N=1 Collaborative firmographics
Firmographics- Name
- N=1 Collaborative
- Legal name
- N=1 Collaborative
- Website
- https://n1collaborative.org
- Company type
- Private
- Founded year
- 2021
- Operating status
- Operating
- Headcount range
- 1–10 employees
- Short description
- N=1 Collaborative is a 2021-founded nonprofit professional society convening researchers, clinicians, patients, regulators, and industry to advance individualized genomic medicines for ultra-rare diseases via its Connections platform, Gene Registry, workgroups, and annual meeting.
- Ownership category
- akta.pro rank
N=1 Collaborative industry classification
Industry- Product category
- Individualized Medicine Professional Society
- NAICS
- Professional Organizations (81392)
- SIC
- Services-Membership Organizations (8600)
- akta.pro primary industry
- Global Health Research, Clinical Trials & Product Development Partnerships (PDPs) (HLAJAOAM)
Keywords
Where N=1 Collaborative is headquartered
LocationHeadquarters
- HQ city
- Somerville
- HQ country
- United States
- HQ region
- North America
Markets served
N=1 Collaborative business model
Business model- GTM type
- B2B and B2C
- Offering type
- Services
- Cost components
- Personnel, Operations, Marketing or Sales, Technology or R&D, Others
Revenue model
- Membership Fees: N1C membership provides access to exclusive platform spaces, patient and research community engagement, virtual streaming for annual meetings, recording access, and direct messaging. Membership directly supports the collective mission of advancing individualized medicines.
- Sponsorships: Mission-aligned organizations sponsor N1C programs including the Connections platform, annual meetings, and seminar series. Sponsorship supports N1C's ability to convene stakeholders, develop shared resources, and advance infrastructure for individualized medicine.
- Conference Registration: Annual meeting generates revenue through tiered registration fees: Industry ($295), Academic & Nonprofit ($180), Trainee ($120), with Parents & Families attending free.
Pricing tiers
| Model | Billing | Price |
|---|---|---|
| Other | One time | Industry registration for 2026 Annual Meeting |
| Other | One time | Academic & Nonprofit registration for 2026 Annual Meeting |
| Other | One time | Trainee registration for 2026 Annual Meeting |
| Other | One time | Parents & Families registration for 2026 Annual Meeting |
Go-to-market motion1 record
Distribution channels3 records
Marketing channels7 records
N=1 Collaborative product offering
Product offeringCore offering
N=1 Collaborative (N1C) is a global nonprofit professional society and convening organization that serves as the professional home for interventional genetics and individualized medicine for ultra-rare diseases. It operates the Connections virtual community platform and delivers programs including eight multidisciplinary workgroups, a seminar series, a podcast, an annual meeting, the Gene Registry data resource, the Donated Resource Center, and the N1C VARIANT eligibility assessment tool, building shared infrastructure across knowledge, resources, and data for the individualized medicine ecosystem.
Product overview
N=1 Collaborative (N1C) is a global community organization serving as the professional home for interventional genetics. Rather than a unified software product, N1C operates as a platform-plus-programs organization offering the Connections community platform as its central hub, complemented by specialized tools (N1C VARIANT for eligibility assessment, Gene Registry for therapy programs), resource programs (Donated Resource Center), educational programming (Seminar Series, Podcast), collaborative workgroups (eight cross-sector groups), and an Annual Meeting. The portfolio is held together by the Connections platform, which serves as the primary engagement and resource-sharing portal for the individualized medicine ecosystem.
Differentiator
Problem solved
Functional benefit
Products and services
- Connections Platform N1C's virtual community platform for open discussion, resource sharing, collaboration, and problem solving among researchers, clinicians, patients, advocates, and industry partners developing individualized genomic medicines.
- N1C VARIANT Variant Assessments Towards Eligibility for Antisense Oligonucleotide Treatment - tools and guidance to support eligibility assessment for individualized therapies, representing a step toward standardized approaches to evaluating treatment eligibility.
- Gene Registry Global catalog of individualized therapy programs, marketed gene therapies, and assessed variants designed to increase visibility and coordination across efforts, connecting researchers, clinicians, and patient communities.
- Donated Resource Center Mobilizes in-kind goods and services to support individualized therapy efforts for patients with urgent needs by coordinating contributions across the ecosystem.
- Fireside Chats in Individualized Medicine Podcast featuring conversations with leaders and emerging voices across the individualized medicine ecosystem, exploring technical strategy and evolving approaches in interventional genetics.
- N1C Workgroups Eight multidisciplinary workgroups (Patient Identification, Preclinical Design, Manufacturing, Institutional Implementation, Clinical Outcomes, Regulatory, Data Coordination, and Access & Funding) that develop practical tools and standards including consensus guidelines, publications, and illustrated examples.
- Seminar Series Ongoing virtual sessions bringing together experts across research, clinical care, and patient advocacy, covering technical insights, case studies, lessons learned, and systems-level challenges.
- N1C Annual Meeting 2026 Annual conference titled 'Individual Journeys, Shared Discoveries: Partnering for Progress in Individualized Medicine' held October 10, 2026 in Denver, CO, bringing together the rare disease and individualized medicine community for shared learning and collaboration.
Quantifiable outcome
- More than 80 patients treated with over 30 different individualized ASOs - demonstrating the field's progression from proof-of-concept to clinical reality
- +2 more outcomes
Companies that use N=1 Collaborative
Customer profileNamed customers5 records
Segments5 records
Ideal customer profiles5 records
N=1 Collaborative technology and API
TechnologyTechnology focussed Yes
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
Feature4 records
N=1 Collaborative partnerships and signals
Strategic signalPartnerships
Six partnerships are on record, tiered core and founding.
- Critical Path Institute (C-Path)coreC-Path and N1C are founding partners in the One to Millions global public-private initiative to enable scalable development of advanced individualized therapies. The initiative leverages C-Path's regulatory-grade centralized data platform to support evidence generation, regulatory decision-making, and scalable development pathways for ASOs, gene therapies, RNA-based treatments, and genome editing for ultra-rare diseases.
- n-Lorem Foundationcoren-Lorem Foundation is a founding member of the One to Millions initiative alongside N1C and C-Path. The foundation focuses on developing individualized antisense oligonucleotide therapies for patients with nano-rare genetic diseases, providing experimental medicines at no cost.
- Mila's Miracle FoundationcoreMila's Miracle Foundation is a founding member of the One to Millions initiative. Founded by Julia Vitarello (Mila's mother), the foundation advocates for and supports the development of individualized medicines for ultra-rare diseases, inspired by the milasen case that pioneered the field.
- Boston Children's HospitalcoreBoston Children's Hospital is a participant in the One to Millions initiative, contributing clinical expertise and research capabilities to the effort to accelerate individualized therapy development for ultra-rare diseases.
- FDAcoreThe FDA provides regulatory framework support through initiatives including the Plausible Mechanism Framework and Rare Disease Evidence Principles. These frameworks enable scalable development pathways for individualized therapies and are referenced in the One to Millions initiative. FDA's 2021 individualized ASO guidance established foundational regulatory pathways.
- Oligonucleotide Therapeutics Society N-of-1+ TaskforcefoundingThe Oligonucleotide Therapeutics Society's N-of-1+ Taskforce provided founding support for N1C's creation in 2021. This scientific society brought together leaders who helped establish N1C as the professional home for the individualized medicine field.
Scale indicators4 records
Recent moves6 records
Expansion highlights6 records
N=1 Collaborative competitors and assessment
Company assessmentBroad incumbents
- National Organization for Rare Disorders (NORD): Largest US rare disease umbrella organization serving patients, advocacy groups, and industry. Comparable as a broad convening and advocacy organization covering rare diseases, though NORD operates at a much larger scale and addresses a wider scope than N1C's individualized-medicine focus.
- Genetic Alliance: Long-established nonprofit advancing genetic health through data platforms (including Platform for Engaging Everyone Responsibly, or PEER) and a network of disease advocacy organizations. Comparable as a community-and-data infrastructure builder for genetic and rare disease communities.
- EveryLife Foundation for Rare Diseases: Advocacy and policy organization for the rare disease community, focused on accelerating science, policy, and regulatory pathways. Comparable as a US-based rare disease ecosystem convener engaging FDA, NIH, and Congress on drug development issues parallel to N1C's regulatory work.
- Personalized Medicine Coalition: Cross-stakeholder coalition advancing the adoption of personalized medicine across policy, clinical practice, and industry. Comparable to N1C as a convening platform for personalized medicine, but operates at a broader policy level across all personalized medicine rather than focusing on individualized n-of-1 therapies.
- American College of Medical Genetics and Genomics (ACMG): Professional society defining practice standards in medical genetics, including interpretation of rare variants. Comparable as a professional membership body shaping standards and guidelines in genetics, though ACMG focuses on clinical genetics broadly rather than individualized therapy development.
Direct peers
- Mila's Miracle Foundation: Founding One to Millions partner. Founded by Julia Vitarello (also an N1C founder), the foundation is anchored on the milasen case that pioneered individualized ASOs and advocates for ultra-rare patient access — closely aligned with N1C's mission and leadership.
- Critical Path Institute (C-Path): Co-founding partner of One to Millions with N1C. C-Path provides regulatory-grade data infrastructure and works across multiple rare disease consortia, making it the closest peer in terms of public-private convening and regulatory science infrastructure for individualized therapies.
- n-Lorem Foundation: Founding partner in the One to Millions initiative and core collaborator with N1C. n-Lorem develops individualized ASO therapies for nano-rare patients at no cost, operating a parallel mission and patient pipeline that N1C's convening infrastructure directly supports.
Emerging players
- Chan Zuckerberg Initiative Rare As One Network: CZI's Rare As One Network funds rare disease patient-led organizations to accelerate research and treatments. Comparable as a CZI-backed ecosystem builder in rare disease; CZI also funded N1C's founding, making it both a funder and a parallel community-building initiative.
Regional players
- FAST (Foundation for Angelman Syndrome Therapeutics): Patient-founded research foundation focused on a single ultra-rare disease. Comparable in mission orientation (patient-driven infrastructure for an ultra-rare condition advancing individualized therapeutics) but operates with a different scale and disease-specific scope.
Market position
Strengths4 records
Weaknesses4 records
Competitive moat5 records
Key risks5 records
Key highlights6 records
Customer concentration
N=1 Collaborative social profiles
Digital presenceN=1 Collaborative financial estimates
Financial estimateRevenue estimate
Valuation estimate
N=1 Collaborative leadership team
Management profileNumber of profiles
Profiles2 records
N=1 Collaborative funding detail
Funding detailFunding overview
Funding rounds
Investors
Funding detail is available on the Subscription and Enterprise plan.Contact sales →
N=1 Collaborative M&A and investment
M&A and investmentM&A
Investments
M&A and investment is available on the Subscription and Enterprise plan.Contact sales →
Frequently asked questions about N=1 Collaborative
What does N=1 Collaborative do?
N=1 Collaborative (N1C) is a global nonprofit professional society and convening organization that serves as the professional home for interventional genetics and individualized medicine for ultra-rare diseases. It operates the Connections virtual community platform and delivers programs including eight multidisciplinary workgroups, a seminar series, a podcast, an annual meeting, the Gene Registry data resource, the Donated Resource Center, and the N1C VARIANT eligibility assessment tool, building shared infrastructure across knowledge, resources, and data for the individualized medicine ecosystem.
Is N=1 Collaborative a public or private company?
N=1 Collaborative is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was N=1 Collaborative founded?
N=1 Collaborative was founded in 2021. It employs 1 to 10 people.
Where is N=1 Collaborative based?
N=1 Collaborative is headquartered in Somerville, United States, in the North America region.
How does N=1 Collaborative make money?
Three revenue lines are on record. Membership Fees are the primary driver. The others are sponsorships and conference Registration.
Who are N=1 Collaborative's main competitors?
Broad incumbents on record are National Organization for Rare Disorders (NORD), Genetic Alliance, EveryLife Foundation for Rare Diseases, Personalized Medicine Coalition and American College of Medical Genetics and Genomics (ACMG). Direct peers are Mila's Miracle Foundation, Critical Path Institute (C-Path) and n-Lorem Foundation. Chan Zuckerberg Initiative Rare As One Network is listed as an emerging player. FAST (Foundation for Angelman Syndrome Therapeutics) is listed as a regional player.
Does N=1 Collaborative have an API?
No public API is recorded for N=1 Collaborative.
What industry is N=1 Collaborative in?
N=1 Collaborative's product category is Individualized Medicine Professional Society. Its primary akta.pro industry code is HLAJAOAM, Global Health Research, Clinical Trials & Product Development Partnerships (PDPs). Its NAICS code is 81392 and its SIC code is 8600.