Rare Genomics Institute
Rare Genomics Institute is a 501(c)(3) nonprofit founded in 2011 that connects undiagnosed rare disease patients with genomic sequencing, expert researchers, and crowdfunding. It serves families through volunteer-based programs spanning sequencing access, patient advocacy, community platforms, and disease education.
- Company typePrivate
- Founded2011
- HeadquartersLos Angeles, United States
- Headcount11–50
- GTM typeB2C
- OfferingServices
What Rare Genomics Institute does
Rare Genomics Institute is a 501(c)(3) nonprofit founded in 2011 and headquartered in San Mateo, California. It operates a volunteer-based model with 11-50 staff and bridges a healthcare gap for undiagnosed rare disease patients and families by connecting them with genomic sequencing services, expert researchers, and crowdfunding resources. The organization reports having supported 1,160 families through 400+ sequencing projects and approximately $5.1M raised cumulatively since inception.
Its core offerings span a Patient Research Services (PRS) function that orchestrates sequencing, expert matchmaking, and crowdfunding for individual families; the RareShare online social network covering 7,000+ rare diseases with contributions from 50+ rare disease experts; RareWear, a wearable-based patient engagement initiative; the BeHEARD Competition, which provides rare disease research grants; and the Rare-Ed/Rare Gene Superheroes E-Learning Course for disease education. Technical infrastructure integrates patient-controlled health records via the Patients Know Best (PKB) platform, and sequencing capacity is delivered through partnerships such as the Illumina iHope Program, with translational expertise supplied by collaborators including Scripps Research Institute and Mayo Clinic. The organization is GDPR- and CCPA-compliant, reflecting handling of sensitive pediatric genomic data.
The business model is donation- and grant-based: no fees are charged to patients, and revenue mechanics rely on individual donations, foundation grants, corporate sponsorships, and the in-house crowdfunding platform that funnels contributions toward sequencing projects. Founder Jimmy Lin (MD/PhD, NIH/NCI alumnus, ex-Natera) leads a leadership team including VPs of Patient Advocacy, R&D, and Communications, with a board drawing experience from Thermo Fisher, Imago BioSciences, and Cydan. Geographic expansion is signaled through the partnership with the Organization for Rare Diseases India (ORDI).
Rare Genomics Institute firmographics
Firmographics- Name
- Rare Genomics Institute
- Legal name
- Rare Genomics Institute
- Website
- https://raregenomics.org
- Company type
- Private
- Founded year
- 2011
- Operating status
- Operating
- Headcount range
- 11–50 employees
- Short description
- Rare Genomics Institute is a 501(c)(3) nonprofit founded in 2011 that connects undiagnosed rare disease patients with genomic sequencing, expert researchers, and crowdfunding. It serves families through volunteer-based programs spanning sequencing access, patient advocacy, community platforms, and disease education.
- Ownership category
- akta.pro rank
Rare Genomics Institute industry classification
Industry- Product category
- Rare Disease Genomics Services
- NAICS
- Individual and Family Services (6241), Medical Laboratories (621511)
- SIC
- Services-Social Services (8300), Services-Medical Laboratories (8071)
- akta.pro primary industry
- Rare Disease & Special Needs Support Organizations (BPAGACAM)
- akta.pro secondary industry
- Molecular Diagnostics & Genomics Laboratories (HLAFAMAE)
Keywords
Where Rare Genomics Institute is headquartered
LocationHeadquarters
- HQ city
- Los Angeles
- HQ country
- United States
- HQ region
- North America
Offices1 record
Markets served
Rare Genomics Institute business model
Business model- GTM type
- B2C
- Offering type
- Services
- Cost components
- Technology or R&D, Operations, Personnel, Marketing or Sales, Others
Revenue model
- Donations and Charitable Contributions: As a 501(c)(3) non-profit organization, RG relies on donations from individuals, foundations, and corporate sponsors. 100% of funds go directly to costs associated with sequencing and analysis of patient genomes, after subtracting third-party transaction costs.
- Crowdfunding: RG provides an individualized crowdfunding platform that allows families to raise funds for their child's genome sequencing costs, ensuring families are not excluded due to lack of funds or insurance coverage.
Pricing tiers
| Model | Billing | Price |
|---|---|---|
| Other | Pay-as-you-go | No-cost programs for rare disease patients |
Go-to-market motion2 records
Distribution channels4 records
Marketing channels9 records
Rare Genomics Institute product offering
Product offeringCore offering
Rare Genomics Institute is a 501(c)(3) nonprofit that helps undiagnosed rare disease patients and families obtain clinical genomic sequencing and find answers at no cost. Through four core programs — Sequencing, Patient Research Services, RareWear, and RareShare — it connects patients with partner institutions, re-examines prior sequencing data, provides free medical devices, and operates an online community. Services are supported by a crowdfunding platform and a multidisciplinary expert network of 50+ advisors.
Product overview
Rare Genomics Institute is a nonprofit organization established in 2011 that operates as a patient advocacy and research support platform. The core offerings consist of four main programs: Sequencing (helping patients obtain clinical genomic sequencing through partner institutions), Patient Research Services (re-examining previous sequencing results using new scientific literature), RareWear (connecting patients to free medical monitoring devices), and RareShare (an online social network for the rare disease community). Supporting these core programs are educational resources including the Rare-Ed Infographics campaign, the Rare Gene Superheroes e-learning course for patient advocate training, and a collection of educational e-books. The organization functions as a bridge connecting undiagnosed rare disease patients to cutting-edge research technologies, physicians, and scientists globally through an expert network and crowdfunding mechanism.
Differentiator
Problem solved
Functional benefit
Brands
- RareShare: An online social network for patients, families, healthcare professionals and others affected by rare disease
- RareWear
- BeHEARD Competition
- Rare-Ed
- Rare Gene Superheroes
Products and services
- Sequencing
Quantifiable outcome
- 1,160 families helped through RG programs
- +5 more outcomes
Companies that use Rare Genomics Institute
Customer profileNamed customers5 records
Segments4 records
Ideal customer profiles3 records
Rare Genomics Institute technology and API
TechnologyTechnology focussed Yes
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
Integration1 record
Feature5 records
Rare Genomics Institute partnerships and signals
Strategic signalPartnerships
Six partnerships are on record, tiered core and supporting.
- Illumina (iHope Program)coreRG works with Illumina through their iHope program to help patients and families obtain whole genome sequencing. This partnership enables access to cutting-edge sequencing technology for patients who cannot afford it.
- Scripps Research InstitutecorePartnership with Scripps Institute for exome sequencing of patients. Exome sequencing performed at Scripps helped diagnose patients like Harrison Snow with Congenital Myasthenic Syndrome.
- Mayo CliniccoreRG partnered with Mayo Clinic for patient care. The nation's specialist in CMS at Mayo Clinic prescribed an effective course of treatment based on the genetic diagnosis provided through RG's sequencing program.
- Research Partners NetworkcoreRG connects patients to leading genomics researchers at academic institutions worldwide. Partners page lists research partners that form the foundation of RG's expert network.
- Patients Know Best (PKB)supportingExternal application used by RG to collect and store medical records and genetic sequencing files. Patients control the sharing of their specimen, clinical, and sequencing data through this platform.
- Organization for Rare Diseases India (ORDI)supportingPartnership with Dr. Harsha Karur Rajasimha's team from ORDI to produce educational materials on Lysosomal Storage Diseases (Niemann-Pick and Tay-Sachs) with translation to Hindi for the Rare Gene Superheroes E-Learning Course.
Scale indicators8 records
Recent moves6 records
Expansion highlights5 records
Rare Genomics Institute competitors and assessment
Company assessmentDirect peers
- National Organization for Rare Disorders (NORD): Largest US rare-disease patient-advocacy nonprofit. Directly comparable mission (advocacy, education, research support) and donor base, but operates at substantially larger scale with paid staff and government relations.
- Genetic Alliance: Nonprofit that connects patients, families, and researchers across genetic and rare conditions via online communities and advocacy tools. Highly comparable to RG's RareShare platform and patient-research mission.
- Global Genes: Patient-advocacy nonprofit focused on the rare-disease community, providing education, advocacy, and community-building programs. Closely comparable to RG's RareShare and educational campaigns.
- EveryLife Foundation for Rare Diseases: US rare-disease advocacy nonprofit focused on accelerating biotech innovation and policy reform. Comparable patient-advocacy mission, with stronger policy and industry-engagement focus than RG.
- Orphanet: European reference portal for rare diseases and orphan drugs, providing a comprehensive disease catalog and expert resources. Comparable to RG's rare-disease catalog and patient-research information services.
- NIH Undiagnosed Diseases Network (UDN): NIH-funded network of academic medical centers that diagnoses patients with rare, unsolved conditions using genomic sequencing. Directly competes with RG's sequencing program but operates with federal funding and clinical-grade infrastructure.
Regional players
- EURORDIS - Rare Diseases Europe: European umbrella organization for rare-disease patient organizations. Comparable advocacy and community-building mission to RG, but primarily serves European patient populations.
Broad incumbents
- Illumina iHope Program: Sequencing-technology giant whose iHope program provides clinical whole-genome sequencing to underserved rare-disease patients. Direct partner of RG, and a broader incumbent whose philanthropic program competes for the same patient population.
- Invitae: Clinical genetic-testing company offering comprehensive rare-disease panels and whole-genome sequencing at scale. Comparable sequencing offering for rare-disease diagnosis, but as a commercial lab rather than a nonprofit intermediary.
- GeneDx: Clinical genomics company specializing in rare-disease and pediatric genetic diagnosis. Comparable sequencing and interpretation services to RG's partner-laboratory model, but commercial rather than nonprofit.
Market position
Strengths5 records
Weaknesses5 records
Competitive moat5 records
Key risks6 records
Key highlights6 records
Customer concentration
Rare Genomics Institute social profiles
Digital presenceRare Genomics Institute compliance and trust
Trust signalCompliance3 records
Rare Genomics Institute financial estimates
Financial estimateRevenue estimate
Valuation estimate
Rare Genomics Institute leadership team
Management profileNumber of profiles
Profiles13 records
Rare Genomics Institute funding detail
Funding detailFunding overview
Funding rounds3 records
Investors2 records
Funding detail is available on the Subscription and Enterprise plan.Contact sales →
Rare Genomics Institute 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 Rare Genomics Institute
What does Rare Genomics Institute do?
Rare Genomics Institute is a 501(c)(3) nonprofit that helps undiagnosed rare disease patients and families obtain clinical genomic sequencing and find answers at no cost. Through four core programs — Sequencing, Patient Research Services, RareWear, and RareShare — it connects patients with partner institutions, re-examines prior sequencing data, provides free medical devices, and operates an online community. Services are supported by a crowdfunding platform and a multidisciplinary expert network of 50+ advisors.
Is Rare Genomics Institute a public or private company?
Rare Genomics Institute is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was Rare Genomics Institute founded?
Rare Genomics Institute was founded in 2011. It employs 11 to 50 people.
Where is Rare Genomics Institute based?
Rare Genomics Institute is headquartered in Los Angeles, United States, in the North America region.
How does Rare Genomics Institute make money?
Two revenue lines are on record. Donations and Charitable Contributions are the primary driver. The others are crowdfunding.
Who are Rare Genomics Institute's main competitors?
Direct peers on record are National Organization for Rare Disorders (NORD), Genetic Alliance, Global Genes, EveryLife Foundation for Rare Diseases, Orphanet and NIH Undiagnosed Diseases Network (UDN). EURORDIS - Rare Diseases Europe is listed as a regional player. Broad incumbents are Illumina iHope Program, Invitae and GeneDx.
Does Rare Genomics Institute have an API?
No public API is recorded for Rare Genomics Institute.
What industry is Rare Genomics Institute in?
Rare Genomics Institute's product category is Rare Disease Genomics Services. Its primary akta.pro industry code is BPAGACAM, Rare Disease & Special Needs Support Organizations, with a secondary code of HLAFAMAE, Molecular Diagnostics & Genomics Laboratories. Its NAICS code is 6241 and its SIC code is 8300.