Rare Disease Research Partners

What Rare Disease Research Partners does

Rare Disease Research Partners (RDRP) is the commercial services arm of the MPS Society, a UK-registered charity focused on mucopolysaccharidosis and related rare diseases. Founded in 2012 with two staff and now employing 11–50 people from its base in Amersham, Buckinghamshire, the organisation provides clinical trial support, managed access programmes, real-world evidence generation, medical communications, publications, counselling, and advisory services. Its customer base consists of pharmaceutical and biotechnology sponsors (including BioMarin) and patient organisations, with delivery spanning more than 20 countries and covering engagements such as a 166-patient, 51-site clinical trial support programme and a 69-patient managed access programme for BioMarin's Vimizim.

The business model is services-based and project-oriented: sponsors pay for bespoke clinical operations, patient recruitment and retention, managed access delivery, evidence generation, and communications work. The not-for-profit status (operating as MPS Commercial) means margins are reinvested into mission-related activity rather than distributed, and financial disclosures are limited. Strategic partnerships with PHARMExcel (patient-focused CRO), Rare Minds (mental health), and RBW Consulting extend delivery capacity without proportional headcount growth. The organisation holds ISO 9001 and ISO 27001 certifications, signalling operational maturity for regulated sponsor work.

RDRP's competitive positioning rests on the patient community and disease expertise inherited from the MPS Society, which provides trusted access to small, hard-to-reach rare disease populations. With approximately 7,000 rare diseases identified globally and only around 5% having approved treatments, the addressable market is large but commercially challenging: sponsors need partners capable of recruiting and retaining patients in conditions affecting only hundreds or thousands worldwide. RDRP's combination of charity-grade patient trust, multi-country operational footprint, and growing service breadth targets this niche where conventional CROs and patient recruitment vendors typically underperform.

Name

Rare Disease Research Partners

Legal name

MPS Commercial

Website

https://rd-rp.com

Company type

Private

Founded year

2012

Operating status

Operating

Headcount range

11–50 employees

Short description

Rare Disease Research Partners is a UK not-for-profit subsidiary of MPS Society delivering clinical trial support, managed access programmes, medical communications, and patient services to pharmaceutical sponsors and rare disease communities across more than 20 countries.

Ownership category

akta.pro rank

Product category

Rare Disease Clinical Research Services

NAICS

Scientific Research and Development Services (5417), Other Individual and Family Services (62419)

SIC

Services-Misc Health & Allied Services, Nec (8090)

akta.pro primary industry

Decentralized & Hybrid Trial Site Services (Home Health/Nursing) (HLAGACAH)

akta.pro secondary industry

Rare Disease & Special Needs Support Organizations (BPAGACAM)

Keywords

• Rare disease clinical trials
• Patient recruitment services
• Medical communications agency
• Managed access programmes
• Patient-reported outcomes research

Headquarters

HQ city

Amersham

HQ country

United Kingdom

HQ region

Europe

Offices1 record

Markets served

GTM type

B2B

Offering type

Services

Cost components

Personnel, Operations, Technology or R&D, Marketing or Sales

Revenue model

1. Pharmaceutical Company Services: RDRP provides clinical trial support, research, and medical communications services to pharmaceutical companies developing treatments for rare diseases. Revenue is generated through service contracts with pharma clients.
2. Patient Organisation Services: Services to patient organizations including research support, advocacy, and communications. The not-for-profit model means surplus is reinvested to support the MPS Society mission.
3. Not-for-Profit Surplus Reinvestment: As a wholly owned not-for-profit subsidiary of the MPS Society, any surplus generated is gifted to the parent charity to support research, education, and advocacy for rare diseases.

Go-to-market motion3 records

Distribution channels3 records

Marketing channels5 records

Core offering

Rare Disease Research Partners (RDRP) is a not-for-profit subsidiary of the MPS Society that delivers clinical trial support, research, medical communications, managed access programmes, and expert advice services for pharmaceutical companies and rare disease patient organizations. Its core work includes coordinating worldwide logistics, travel, accommodation, and reimbursement for rare disease clinical trial participants, generating patient-reported outcomes evidence, and managing data collection for NICE and NHS reimbursement submissions.

Product overview

Rare Disease Research Partners (RDRP) is a not-for-profit subsidiary of the MPS Society that offers a comprehensive suite of services supporting research and access to treatment for people living with rare conditions. The core offerings include Clinical Trials Support (providing worldwide logistics, travel, accommodation, and reimbursement services), Research and Evidence (patient-centered research and surveys), Medical Communications (patient materials, publications, symposia), Managed Access Programmes (bespoke data collection and patient-reported outcome analysis), Advice Services (NICE evaluation support, advisory boards), Publications (manuscripts, posters, reports), and Counselling Support. RDRP also provides educational resources like Rare Disease Pocket Knowledge. The company reinvests any surplus to support the MPS Society's mission.

Differentiator

Problem solved

Functional benefit

Products and services

• Clinical Trials Support Provides pharmaceutical sponsors and clinical trial sites with worldwide patient access logistics including personalised travel coordination, accommodation arrangements, financial reimbursement, 24/7 assistance, and multilingual support in 240+ languages for rare disease clinical trial participants.
• Research and Evidence Undertakes novel patient-centered research into the impact of rare conditions on patients and families using surveys, interviews, focus groups, and evidence curation to support development and reimbursement of new rare disease treatments.
• Medical Communications Develops rare disease awareness communications ranging from patient-friendly materials and educational resources to scientific publications, symposia, and peer-reviewed manuscripts for pharmaceutical and patient organization clients.
• Managed Access Programmes Delivers bespoke managed access programmes including data collection, patient-reported outcome analysis, and reporting of results to stakeholders such as NICE, NHS England, and pharmaceutical clients for rare disease treatments.
• Advice Services Offers expert advice on engaging patients, NICE evaluation processes, advisory boards, focus groups, and stakeholder communications with public health bodies, drawing on specialist rare disease knowledge.
• Publications Produces and manages various rare disease publications including peer-reviewed manuscripts, conference posters, reports, booklets, and plain language summaries for the rare disease community and pharmaceutical clients.
• Counselling Support for Clinical Trial Participants Provides emotional and psychological support to clinical trial participants and their families through collaboration with Rare Minds, offering accredited counsellors with expertise in rare conditions.

Quantifiable outcome

• Audit of five clinical trials: withdrawal rate lower than literature benchmarks for rare disease populations
• +2 more outcomes

Named customers4 records

Segments3 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature3 records

Partnerships

Six partnerships are on record, tiered core and minor.

• BioMarincoreStrategic or Co-development Partner · 7 April 2022Pharmaceutical company partner for Vimizim (elosulfase alfa) managed access programme. RDRP played key role in data collection enabling NICE recommendation for routine NHS use after 5-year managed access agreement.
• PHARMExcelcoreStrategic or Co-development PartnerCollaboration with PHARMExcel, a CRO specializing in rare disease clinical trials. Joint article by RDRP Head of Clinical Trial Support and PHARMExcel CEO on engaging patients and advocates in rare disease clinical trials. PHARMExcel advocates for patient involvement and connects sponsors with relevant advocacy groups.
• Rare Minds (Rareminds)coreStrategic or Co-development PartnerCollaboration to provide counselling support services for clinical trial participants. RDRP Head of Clinical Trial Support noted this addresses the emotional burden on patients and families during challenging clinical trial participation.
• RBW ConsultingminorStrategic or Co-development PartnerRBW Consulting supported the development of the Consensus Statement on Psychological Support at Diagnosis, working with a panel of experts including Rare Minds.
• Clinical Trial Sponsors (Various)coreStrategic or Co-development PartnerOngoing partnerships with pharmaceutical sponsors providing clinical trial support services including logistics, reimbursement, and patient coordination for rare disease clinical trials.
• MPS Society UKcoreStrategic or Co-development PartnerRDRP is a wholly owned, not-for-profit subsidiary of the MPS Society. All surplus is reinvested to support the Society's mission. RDRP leverages the Society's expertise and patient community relationships.

Scale indicators6 records

Recent moves6 records

Expansion highlights5 records

Direct peers

• Worldwide Clinical Trials: Mid-sized CRO with a notable specialty in rare disease clinical research, providing trial design, site management and patient support services that directly overlap with RDRP's clinical offering for orphan drug sponsors.
• Clincierge: Specialist patient logistics and concierge services for clinical trial participants (travel, accommodation, reimbursement) - the closest direct peer to RDRP's Clinical Trials Support line, with a similar focus on rare and complex disease trials.
• Clinigen: Global pharma services group operating a managed access / early access programme business alongside clinical supply - directly overlapping with RDRP's Managed Access Programmes line and broader clinical trial support.
• mk alliance: Patient-focused clinical trial concierge and engagement services for rare and specialty disease trials, combining logistics, reimbursement and patient-centric support - very similar operating model to RDRP.

Broad incumbents

• Parexel: Top global CRO with extensive rare disease and patient-centric service capabilities, including decentralised trial solutions that overlap with RDRP's patient logistics and managed access offering.
• Medpace: Mid-to-large global CRO with significant rare disease and oncology clinical trial presence; offers a much broader portfolio but actively competes for the same rare disease sponsor engagements as RDRP.
• IQVIA: The world's largest CRO and life sciences services provider, offering full-service clinical operations including decentralised trial and patient logistics capabilities that compete with RDRP at the enterprise sponsor level.
• ICON plc: Large global CRO offering clinical trial management, decentralised services and rare disease programmes - competes broadly for the same pharma and biotech sponsor contracts as RDRP.

Emerging players

• Medable: Decentralised clinical trial technology platform enabling remote visits, eConsent and patient engagement - emerging alternative that sponsors evaluate when deciding how to deliver RDRP-like patient support.
• myTomorrows: Emerging patient access platform combining managed/expanded access programme delivery with patient recruitment for not-yet-approved therapies - direct overlap with RDRP's managed access and rare disease trial support work.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks6 records

Key highlights7 records

Customer concentration

• Xx.com/RD__RP
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• LinkedInlinkedin.com/company/rare-disease-research-partners

Revenue estimate

Valuation estimate

Number of profiles

Profiles5 records

Funding overview

Funding rounds

Investors

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

M&A

Investments

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

Frequently asked questions about Rare Disease Research Partners