Rare Disease Research Network (RDRN)

Rare Disease Research Networkingrd-rn.org

RDRN is a UK non-profit web platform that connects rare disease patients, researchers, healthcare professionals, industry partners, and funders to co-produce patient-driven research through matchmaking, a research ideas showcase, and curated resources.

Company typePrivate
Founded2022
Headquarters—
Headcount1–10
GTM typeB2B and B2C
OfferingServices

What Rare Disease Research Network (RDRN) does

Rare Disease Research Network (RDRN) is a UK non-profit online platform founded in 2022–2023 that connects five stakeholder groups — patients and carers, researchers, health and social care professionals, industry partners, and funders — to facilitate patient-driven and co-produced rare disease research. It is operated by Cambridge Rare Disease Network (CamRARE) and co-created with the Patient Led Research Hub and a 21-member community Working Group recruited in October 2023. Membership is free and open globally, with self-service registration and admin approval within 48 hours.

The platform is built around a web-based networking stack featuring member profiles tagged using the ORPHAnet disease taxonomy, intuitive search and matchmaking filters, a Research Ideas Showcase for early-stage concepts, a Resources & Support Hub with training and mentorship materials, and a Share Your Experience section for community learning. It is GDPR-compliant, hosted on UK servers, and designed to WCAG 2.1 Level AA accessibility standards. Development was supported by UK-based website partner Red Web.

RDRN is funded primarily through grants and charitable contributions rather than commercial revenue. It received an 18-month NIHR 'Public Partnership' Programme Development Grant in January 2023, and is actively building additional funding streams via corporate sponsorship and direct infrastructure-fund contributions from funders. Platform membership remains free by design, with no monetised pricing tier.

Rare Disease Research Network (RDRN) firmographics

Firmographics

Name: Rare Disease Research Network (RDRN)
Legal name: Rare Disease Research Network (operated by Cambridge Rare Disease Network)
Website: https://rd-rn.org
Company type: Private
Founded year: 2022
Operating status: Operating
Headcount range: 1–10 employees
Short description: RDRN is a UK non-profit web platform that connects rare disease patients, researchers, healthcare professionals, industry partners, and funders to co-produce patient-driven research through matchmaking, a research ideas showcase, and curated resources.
Ownership category
akta.pro rank

Rare Disease Research Network (RDRN) industry classification

Industry

Product category: Rare Disease Research Networking
NAICS: Voluntary Health Organizations (813212), Individual and Family Services (6241), Social Assistance (624)
SIC: Services-Membership Organizations (8600), Services-Social Services (8300)
akta.pro industry: PRIMARYBPAGACAM
Rare Disease & Special Needs Support Organizations
Business & Public Services/Nonprofit, NGO & Social Services/Health & Medical Nonprofits
SECONDARYBPAGACAA
Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS)
Business & Public Services/Nonprofit, NGO & Social Services/Health & Medical Nonprofits
SECONDARYHLALALAC
Second Opinion & Expert Matching Platforms
Healthcare & Life Sciences/Telehealth Platforms/Telehealth Marketplace & Referral Platforms

Keywords

Rare disease research
Patient-driven research
Research matchmaking platform
Rare disease patient network
Non-profit research collaboration

Rare Disease Research Network (RDRN) business model

Business model

GTM type: B2B and B2C
Offering type: Services
Cost components: Personnel, Technology or R&D, Operations, Marketing or Sales

Revenue model

NIHR Programme Development Grant: RDRN received an 18-month NIHR 'Public Partnership' Programme Development Grant in January 2023 to support the rare disease community and build network infrastructure.
Corporate Sponsorship: RDRN seeks corporate sponsorship from industry partners to fund mentorship programmes, events, outreach, and resource development.
Infrastructure Support Funding: Funders can directly invest in RDRN online infrastructure, in-person events, staff, consumables, or outreach to ensure the platform remains free to members.

Pricing tiers

Model	Billing	Price
Freemium	Others	Free membership for all user types

Go-to-market motion1 record

Distribution channels2 records

Marketing channels4 records

Rare Disease Research Network (RDRN) product offering

Product offering

Core offering

Patient-driven rare disease research matchmaking platform that connects patients, researchers, healthcare professionals, industry, and funders to collaborate on rare disease research projects. Free membership-based service offering a research ideas showcase, networking, mentorship via the CamRARE Mentoring Programme, and a resource library.

Product overview

The Rare Disease Research Network (RDRN) is a unified online networking platform that facilitates patient-driven and co-produced rare disease research. The core platform integrates multiple interconnected features: user registration with ORPHAnet-based tagging for research interests, a Research Ideas Showcase for presenting concepts, Network & Matchmaking tools for finding collaborators across patient, researcher, healthcare, industry, and funder communities, a Resources & Support Hub with training and mentorship, and a Share Your Experience section for success stories. The platform was co-created by CamRARE, Patient Led Research Hub, and members of the UK rare disease community, with development supported by an NIHR Programme Development Grant.

Differentiator

Problem solved

Functional benefit

Products and services

Rare Disease Research Network (RDRN) Platform Free online platform connecting patients, researchers, healthcare professionals, industry, and funders interested in rare disease research collaboration. Members can showcase research ideas, search for collaborators, share lived experience, and access resources.
CamRARE Mentoring Programme Mentoring support for rare disease patients, carers, and researchers, helping mentees navigate research engagement and personal development.
RDRN Newsletter Regular newsletter delivered to RDRN members providing updates on rare disease research, platform news, events, and engagement opportunities.

Quantifiable outcome

312 platform members connected across sectors
+2 more outcomes

Companies that use Rare Disease Research Network (RDRN)

Customer profile

Named customers3 records

Segments6 records

Ideal customer profiles6 records

Rare Disease Research Network (RDRN) technology and API

Technology

Technology focussed Yes

API detail

Has API: No
API docs
API detail

Core technology

AI maturity

App detail

Feature3 records

Rare Disease Research Network (RDRN) partnerships and signals

Strategic signal

Partnerships

Six partnerships are on record, tiered minor, major and core.

Patient Experience LibraryminorStrategic or Co-development Partner · 1 November 2025Co-authored the BMJ Open commentary with Patient Experience Library, outlining the need for patient-driven research and how RDRN fits within the PPI landscape.
Genetics Alliance UKminorStrategic or Co-development Partner · 1 November 2025Co-authored the BMJ Open commentary with Genetics Alliance UK, contributing to the publication on patient-driven research approaches.
Rarefest24majorStrategic or Co-development Partner · 1 November 2024RDRN launched publicly at Rarefest24, a festival dedicated to rare diseases in Cambridge hosted by Cambridge Rare Disease Network. This event served as the public launch platform for the network.
Red Web (Lewis Cornwell)coreTechnology or Integration · 1 January 2024Red Web, led by Lewis Cornwell, developed the RDRN website platform, translating community-generated ideas into a fully functioning digital platform for launch at Rarefest24.
Patient Led Research Hub (PLRH)coreStrategic or Co-development Partner · 1 January 2022PLRH partnered with Cambridge Rare Disease Network in 2022 to initiate the RDRN project. PLRH supports patient-driven research and works with UK-based rare disease patient groups to deliver clinical studies based on their own research questions.
Cambridge Rare Disease Network (CamRARE)coreStrategic or Co-development Partner · 1 January 2022CamRARE partnered with Patient Led Research Hub in 2022 to initiate the RDRN project. CamRARE supports the rare disease community, builds multi-stakeholder networks, hosts events, and facilitates access to experts through lived experience.

Scale indicators5 records

Recent moves7 records

Expansion highlights5 records

Rare Disease Research Network (RDRN) competitors and assessment

Company assessment

Direct peers

Beacon for Rare Diseases (formerly Findacure): A UK charity focused on supporting patient groups to drive research and treatment development for rare diseases. Highly comparable as a UK-based nonprofit offering resources, training and networking to enable patient organisations to participate in research, overlapping significantly with RDRN's mission.
Patient Led Research Hub (PLRH): A UK-based initiative supporting patient-initiated clinical studies that directly partnered with CamRARE to co-found RDRN. Closest analog: both champion patient-driven research priorities in the rare disease space using co-production methodologies.
Genetic Alliance UK: A UK national alliance of over 200 charities supporting those affected by genetic conditions; co-authored the BMJ Open commentary with RDRN. Highly comparable as a UK-based rare and genetic disease convening and advocacy organisation, with overlapping patient and research communities.

Regional players

Canadian Organization for Rare Disorders (CORD): Canada's national network for organizations representing rare disease patients. Comparable as a national umbrella advancing patient-driven rare disease research, but operating primarily in the Canadian market rather than globally.

Broad incumbents

EURORDIS – Rare Diseases Europe: A large European umbrella organisation representing over 1,000 rare disease patient organisations. Comparable as a cross-stakeholder convening platform for rare disease research and policy, but operates at continental scale rather than as a digital matchmaking tool.
National Organization for Rare Disorders (NORD): The leading US rare disease umbrella organisation providing research grants, advocacy, and patient networking. Comparable mission to RDRN in supporting rare disease communities, but with a much broader portfolio including policy and patient assistance programs.
Orphanet: The European reference database for rare diseases whose disease taxonomy (ORPHAnet codes) is used by RDRN for member tagging. Comparable as a foundational infrastructure layer for rare disease research matchmaking and patient identification across Europe.
Global Genes: A US-based rare disease advocacy organisation building cross-disease communities, providing toolkits, and convening stakeholders. Comparable in cross-stakeholder convening and patient empowerment orientation, though broader in scope and advocacy-led.

Others

NIHR (National Institute for Health and Care Research) – PPI Programme: The UK government funder of the Public Partnership Programme that awarded RDRN its seed grant and operates the broader UK PPI landscape within which RDRN is positioned. Comparable as a strategic ecosystem partner and funding source rather than a direct competitor.

Emerging players

Raremark: A patient-powered data platform for rare diseases that connects patients and generates real-world evidence for research. Comparable as a digital platform enabling rare disease patient engagement and data contribution, though more focused on patient-generated health data than research matchmaking.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat3 records

Key risks6 records

Key highlights7 records

Customer concentration

Rare Disease Research Network (RDRN) compliance and trust

Trust signal

Compliance3 records

Rare Disease Research Network (RDRN) financial estimates

Financial estimate

Revenue estimate

Valuation estimate

Rare Disease Research Network (RDRN) leadership team

Management profile

Number of profiles

Profiles1 record

Rare Disease Research Network (RDRN) funding detail

Funding detail

Funding overview

Funding rounds

Investors

Funding detail is available on the Subscription and Enterprise plan.Contact sales →

Rare Disease Research Network (RDRN) M&A and investment

M&A and investment

M&A

Investments

M&A and investment is available on the Subscription and Enterprise plan.Contact sales →

Frequently asked questions about Rare Disease Research Network (RDRN)

What does Rare Disease Research Network (RDRN) do?

Is Rare Disease Research Network (RDRN) a public or private company?

Rare Disease Research Network (RDRN) is a private company. It is classified as nonprofit foundation owned and is currently operating.

When was Rare Disease Research Network (RDRN) founded?

Rare Disease Research Network (RDRN) was founded in 2022. It employs 1 to 10 people.

How does Rare Disease Research Network (RDRN) make money?

Three revenue lines are on record. NIHR Programme Development Grant is the primary driver. The others are corporate Sponsorship and infrastructure Support Funding.

Who are Rare Disease Research Network (RDRN)'s main competitors?

Direct peers on record are Beacon for Rare Diseases (formerly Findacure), Patient Led Research Hub (PLRH) and Genetic Alliance UK. Canadian Organization for Rare Disorders (CORD) is listed as a regional player. Broad incumbents are EURORDIS – Rare Diseases Europe, National Organization for Rare Disorders (NORD), Orphanet and Global Genes. NIHR (National Institute for Health and Care Research) – PPI Programme is listed as an others. Raremark is listed as an emerging player.

Does Rare Disease Research Network (RDRN) have an API?

No public API is recorded for Rare Disease Research Network (RDRN).

What industry is Rare Disease Research Network (RDRN) in?

Rare Disease Research Network (RDRN)'s product category is Rare Disease Research Networking. Its primary akta.pro industry code is BPAGACAM, Rare Disease & Special Needs Support Organizations, with a secondary code of BPAGACAA, Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS). Its NAICS code is 813212 and its SIC code is 8600.