Rare Epilepsy Network
Rare Epilepsy Network is a nonprofit collaborative that operates a patient registry, newsletter, member directory, and stakeholder survey, serving 80+ partner organizations and patients across 41 rare epilepsy conditions.
- Company typePrivate
- Founded2014
- HeadquartersNot specified, United States
- Headcount1–10
- GTM typeB2C
- OfferingServices
What Rare Epilepsy Network does
Rare Epilepsy Network (REN) is a nonprofit collaborative infrastructure organization focused on improving outcomes for people with rare epilepsies. Founded in 2013-2014 with seed support from the Patient-Centered Outcomes Research Institute (PCORI), REN operates as a multi-stakeholder coalition that began with 32 founding partner organizations and has grown to 80+ member organizations. The organization serves patients, caregivers, clinicians, and researchers across 41 rare epilepsy conditions, acting as connective tissue between patient advocacy groups, academic research institutions (including RTI and Columbia University), and clinical stakeholders. Leadership is provided by Director Ilene Miller, with a staff of 1-10 employees.
REN's core products include the REN Registry (a patient registry that enrolled 1,459 participants across 41 rare epilepsy conditions between 2014-2018), the Rare Epilepsy RoundUp newsletter, the REN Member's Map, the REN Stakeholder Survey, and a Resources hub. The technology stack is minimal — built on a Wix-hosted website with no disclosed APIs, proprietary software platforms, or technical infrastructure beyond standard web publishing and data collection tools. The registry appears to be the organization's primary data asset, though no current enrollment figures or active data contribution pipeline are disclosed.
REN's business model is nonprofit and grant-supported rather than revenue-generating. The organization does not sell products or services; instead, it derives operating support from seed and follow-on grants (initially PCORI in 2014), member organization participation, and in-kind contributions. As a member-driven coalition network, REN's value proposition rests on shared infrastructure that individual rare epilepsy advocacy groups could not economically build alone. No pricing model, paid tiers, or commercial revenue streams are referenced in the input data.
Rare Epilepsy Network firmographics
Firmographics- Name
- Rare Epilepsy Network
- Legal name
- Rare Epilepsy Network
- Website
- https://rareepilepsynetwork.org
- Company type
- Private
- Founded year
- 2014
- Operating status
- Operating
- Headcount range
- 1–10 employees
- Short description
- Rare Epilepsy Network is a nonprofit collaborative that operates a patient registry, newsletter, member directory, and stakeholder survey, serving 80+ partner organizations and patients across 41 rare epilepsy conditions.
- Ownership category
- akta.pro rank
Rare Epilepsy Network industry classification
Industry- Product category
- Rare Disease Patient Advocacy Services
- NAICS
- Individual and Family Services (6241), Other Individual and Family Services (624190)
- SIC
- Services-Social Services (8300), Services-Misc Health & Allied Services, Nec (8090), Services-Health Services (8000)
- akta.pro primary industry
- Rare Disease & Special Needs Support Organizations (BPAGACAM)
- akta.pro secondary industry
- Disease Registries (Cancer, Immunization, Rare Disease, etc.) (HLAJAJAE)
Keywords
Where Rare Epilepsy Network is headquartered
LocationHeadquarters
- HQ city
- Not specified
- HQ country
- United States
- HQ region
- North America
Offices1 record
Markets served
Rare Epilepsy Network business model
Business model- GTM type
- B2C
- Offering type
- Services
- Cost components
- Personnel, Operations, Technology or R&D, Marketing or Sales, Others
Revenue model
- PCORI Seed Funding: REN was established with seed funding from the Patient-Centered Outcomes Research Institute (PCORI). The initial funding supported the creation of the REN patient registry.
- Donations and Membership Support: As a nonprofit organization (EIN: 39-3822834), REN likely operates through donations and organizational membership support to fund operations, programs, and services.
Go-to-market motion1 record
Distribution channels3 records
Marketing channels10 records
Rare Epilepsy Network product offering
Product offeringCore offering
Rare Epilepsy Network is a nonprofit patient advocacy organization that operates a collaborative infrastructure for the rare epilepsy community, including a patient registry (1,459 participants across 41 conditions), the Rare Epilepsy RoundUp newsletter, an interactive member map of 80+ partner organizations, and stakeholder surveys. All offerings are provided free of charge to patients, families, caregivers, clinicians, and researchers.
Product overview
Rare Epilepsy Network (REN) is a nonprofit patient advocacy organization serving as an innovative collaborative infrastructure that connects 80+ rare epilepsy organizations. The organization operates several core programs: the REN Registry (patient data collection platform), the Rare Epilepsy RoundUp Newsletter (monthly communication), the REN Member's Map (geographic organization locator), the REN Stakeholder Survey (community research tool), and a Resources hub. REN focuses on driving urgent, patient-centered research, education, and advocacy for the rare epilepsy community rather than offering commercial technology products.
Differentiator
Problem solved
Functional benefit
Products and services
- REN Registry Online patient registry collecting self-reported health data from participants across 41 rare epilepsy conditions. As of the most recent reported figures, the registry has enrolled 1,459 participants. It is open to patients, families, and caregivers affected by rare epilepsies and is used to support patient-centered outcomes research.
- Rare Epilepsy RoundUp Newsletter Recurring email newsletter delivering rare epilepsy news, research updates, and community announcements to patients, families, member organizations, and clinicians. Distributed free of charge via email subscription.
- REN Member's Map Interactive online map listing the 80+ rare epilepsy patient advocacy organizations in the REN coalition, allowing patients and families to locate condition-specific or geographically relevant advocacy groups. Free to access.
- REN Stakeholder Survey Periodic survey program administered to REN's stakeholder community to gather input on priorities, unmet needs, and research interests within the rare epilepsy population. Findings inform REN's research agenda and program development.
- Rare Epilepsy Resources and Tools Curated collection of educational resources, tools, and informational materials for patients, families, caregivers, clinicians, and researchers in the rare epilepsy community. Hosted on the REN website and provided free of charge.
Quantifiable outcome
- Registry collected data from 1,459 participants between 2014-2018
- +2 more outcomes
Companies that use Rare Epilepsy Network
Customer profileNamed customers4 records
Segments4 records
Ideal customer profiles3 records
Rare Epilepsy Network technology and API
TechnologyTechnology focussed No
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
Feature3 records
Rare Epilepsy Network partnerships and signals
Strategic signalPartnerships
Five partnerships are on record, tiered core and minor.
- Epilepsy FoundationcoreThe Epilepsy Foundation partnered with 32 rare epilepsy organizations, RTI, and Columbia University to create REN. The foundation continues to host the REN registry and serve as a central partner in the network.
- Research Triangle Institute (RTI)coreRTI partnered in the creation of REN to help design and implement the patient registry infrastructure for collecting data across 41 rare epilepsy conditions.
- Columbia UniversitycoreColumbia University collaborated with the Epilepsy Foundation, RTI, and 32 rare epilepsy organizations to establish REN and its patient registry for rare epilepsy research.
- Dup15q AllianceminorAngelman Syndrome Foundation partnered with Dup15q Alliance to expand clinical research network from 8 to 18 clinics, demonstrating collaborative efforts within the REN ecosystem.
- Yale School of MedicineminorCRELD1 Warriors worked closely with Yale School of Medicine to publish the first medical paper on CRELD1 and aim to build upon this research to learn more about potential therapies.
Scale indicators4 records
Recent moves6 records
Expansion highlights4 records
Rare Epilepsy Network competitors and assessment
Company assessmentBroad incumbents
- National Organization for Rare Disorders (NORD): Largest US umbrella organization for rare disease patient communities, operating patient registries, research grants, and advocacy programs. Comparable as a coalition-style nonprofit serving rare disease populations, but at much broader scope than REN's epilepsy focus.
- International League Against Epilepsy (ILAE): Global professional organization of epileptologists and researchers that drives epilepsy research, classification, and education. Comparable in research orientation and clinician engagement, though physician-led rather than patient-led like REN.
- EveryLife Foundation for Rare Diseases: Rare disease policy and advocacy nonprofit working with hundreds of patient organizations on federal policy, FDA engagement, and newborn screening. Comparable as a coalition enabler for rare disease patient groups, though focused on policy rather than registries.
Direct peers
- Child Neurology Foundation: Nonprofit connecting child neurologists, patients, and families to improve outcomes for pediatric neurologic conditions, many of which include rare epilepsies. Comparable in patient–clinician bridge model and pediatric rare-disease advocacy focus.
- Tuberous Sclerosis Alliance: National nonprofit driving research and advocacy for tuberous sclerosis complex, in which epilepsy is a major manifestation. Comparable as a rare-disease patient organization running its own registry and research programs, with substantial overlap in clinician and research networks.
- Dravet Syndrome Foundation: Disease-specific nonprofit for Dravet syndrome, a rare epilepsy, that funds research and operates its own patient registry. Comparable in mission, target audience, and registry/research infrastructure at the single-condition level — and a current REN member organization.
- Epilepsy Foundation: National epilepsy advocacy nonprofit and a core founding partner of REN that also hosts the REN registry. Directly comparable in mission (epilepsy research, education, advocacy) and overlapping constituency of patients, families, and clinicians.
- SCN1A Gain of Function Foundation: Disease-specific advocacy organization for SCN1A gain-of-function variants, a rare genetic epilepsy. Currently profiled as a REN member, and directly comparable as a single-condition rare epilepsy advocacy nonprofit participating in REN's coalition.
Others
- Genetic and Rare Diseases Information Center (GARD): NIH-funded resource that provides information on rare diseases, including many rare epilepsies, to patients and clinicians. Comparable as a free, public-information resource for the rare epilepsy community, though government-run rather than community-led.
Regional players
- PCORnet Rare Disease Community: PCORI-funded research network focused on patient-centered outcomes research across rare disease patient communities. Comparable as a registry and patient-engagement infrastructure for rare disease research funded through PCORI, the same funder that seeded REN.
Market position
Strengths4 records
Weaknesses4 records
Competitive moat4 records
Key risks4 records
Key highlights5 records
Customer concentration
Rare Epilepsy Network social profiles
Digital presenceRare Epilepsy Network financial estimates
Financial estimateRevenue estimate
Valuation estimate
Rare Epilepsy Network leadership team
Management profileNumber of profiles
Profiles1 record
Rare Epilepsy Network funding detail
Funding detailFunding overview
Funding rounds
Investors
Funding detail is available on the Subscription and Enterprise plan.Contact sales →
Rare Epilepsy Network 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 Epilepsy Network
What does Rare Epilepsy Network do?
Rare Epilepsy Network is a nonprofit patient advocacy organization that operates a collaborative infrastructure for the rare epilepsy community, including a patient registry (1,459 participants across 41 conditions), the Rare Epilepsy RoundUp newsletter, an interactive member map of 80+ partner organizations, and stakeholder surveys. All offerings are provided free of charge to patients, families, caregivers, clinicians, and researchers.
Is Rare Epilepsy Network a public or private company?
Rare Epilepsy Network is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was Rare Epilepsy Network founded?
Rare Epilepsy Network was founded in 2014. It employs 1 to 10 people.
Where is Rare Epilepsy Network based?
Rare Epilepsy Network is headquartered in Not specified, United States, in the North America region.
How does Rare Epilepsy Network make money?
Two revenue lines are on record. PCORI Seed Funding is the primary driver. The others are donations and Membership Support.
Who are Rare Epilepsy Network's main competitors?
Broad incumbents on record are National Organization for Rare Disorders (NORD), International League Against Epilepsy (ILAE) and EveryLife Foundation for Rare Diseases. Direct peers are Child Neurology Foundation, Tuberous Sclerosis Alliance, Dravet Syndrome Foundation, Epilepsy Foundation and SCN1A Gain of Function Foundation. Genetic and Rare Diseases Information Center (GARD) is listed as an others. PCORnet Rare Disease Community is listed as a regional player.
Does Rare Epilepsy Network have an API?
No public API is recorded for Rare Epilepsy Network.
What industry is Rare Epilepsy Network in?
Rare Epilepsy Network's product category is Rare Disease Patient Advocacy Services. Its primary akta.pro industry code is BPAGACAM, Rare Disease & Special Needs Support Organizations, with a secondary code of HLAJAJAE, Disease Registries (Cancer, Immunization, Rare Disease, etc.). Its NAICS code is 6241 and its SIC code is 8300.