Rarelab

What Rarelab does

Rarelab S.r.l. is an Italian strategic consulting firm headquartered in Rome that operates exclusively in the rare disease sector. Founded in 2010 by Ilaria Ciancaleoni Bartoli (now President, with Francesco Macchia as Managing Director), the firm employs roughly 20 professionals with 10+ years of domain experience and serves three primary client segments: patient associations (200+ supported), pharmaceutical companies (50+ partnered, 300+ projects delivered), and Italian/European institutions. Service lines span Communication, Patient Advocacy, Public Affairs, Market Access, and Editorial/Publishing, delivered both digitally and in-person.

The firm's underlying platform is a portfolio of specialized media and research assets. These include OMaR Osservatorio Malattie Rare (founded 2010, the first Italian/European press agency dedicated to rare diseases and rare tumors, HON Code certified with 160,000 monthly unique visits as of April 2020), OTA Osservatorio Terapie Avanzate (2019, advanced therapies think tank covering gene therapy, cell therapy, CRISPR, and CAR-T), OSSFOR Osservatorio Farmaci Orfani (2016, orphan drug research center co-founded with CREA Sanità), OSN Osservatorio Screening Neonatale (2018, neonatal screening portal), and Sperimentazionicliniche.it (2018, including the Clinical Map service translating ~45,000 clinical trials terms into Italian). Distribution is reinforced by recurring event properties (Premio OMaR annual awards since 2012, AT2 science-shows since 2019, retreAT policy shaping initiative) and digital content (podcast Reshape, The RareSide social talk series).

Rarelab's revenue model is professional services: project-based and multi-year consulting engagements with pharmaceutical enterprises, advocacy support contracts with patient associations, and policy/institutional work for government bodies. Pricing is not publicly disclosed. The firm operates primarily in Italy with staff distributed across Rome, Padua, Milan, Perugia, and Cagliari, and is founder-owned with no identified external investors, funding rounds, or parent company. Notable institutional relationships include Fondazione Telethon, CREA Sanità, SIMMESN, Rete MetabERN, and the Alleanza Malattie Rare (AMR) permanent technical table established at the Italian Chamber of Deputies in 2017.

Name

Rarelab

Legal name

Rarelab s.r.l.

Website

https://rarelab.eu

Company type

Private

Founded year

2010

Operating status

Operating

Headcount range

11–50 employees

Short description

Rarelab is an Italian strategic consulting firm specializing in rare diseases, serving patient associations, pharmaceutical companies, and institutions through communication, patient advocacy, market access, public affairs, and publishing services anchored by five specialized observatories.

Ownership category

akta.pro rank

Product category

Healthcare Communications Consulting

NAICS

Public Relations Agencies (541820), All Other Professional, Scientific, and Technical Services (54199), Scientific Research and Development Services (5417), Business Associations (813910)

SIC

Services-Health Services (8000), Services-Misc Health & Allied Services, Nec (8090), Miscellaneous Publishing (2741), Services-Membership Organizations (8600)

akta.pro primary industry

Rare Disease & Special Needs Support Organizations (BPAGACAM)

Keywords

• Rare disease consulting
• Patient advocacy services
• Pharmaceutical communications
• Market access consulting
• Healthcare public affairs

Headquarters

HQ city

Rome

HQ country

Italy

HQ region

Europe

Offices6 records

Markets served

GTM type

B2B

Offering type

Services

Cost components

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

Revenue model

1. Strategic Consulting Services: RareLab provides strategic consulting services in Communication, Publishing, Market Access, Patient Advocacy, and Public Affairs to patient associations, pharmaceutical companies, and institutions. Services are delivered digitally and in-person.
2. Publishing and Editorial Services: Publishing services including specialized journalism, newsletters on demand, corporate communication products, and public information content for entities, associations, and media operators.
3. Events and Webinars: Organization of professional events, conferences, webinars, and training courses for healthcare stakeholders, pharmaceutical companies, and patient associations.

Pricing tiers

Go-to-market motion3 records

Distribution channels3 records

Marketing channels9 records

Core offering

RareLab is a strategic consulting company dedicated to rare diseases, providing Communication, Publishing, Patient Advocacy, Market Access, and Public Affairs services to patient associations, pharmaceutical companies, and Italian/European institutions. The firm also publishes specialized news platforms (OMaR, OTA, OSSFOR, OSN, Sperimentazionicliniche.it), runs the annual Premio OMaR award, and organizes events such as AT2 and retreAT, operating as a 'laboratory of ideas' in the rare disease ecosystem.

Product overview

RareLab is a strategic consulting company dedicated to rare diseases, operating as a 'laboratory of ideas' that offers services in Communication, Publishing, Events, Patient Advocacy, Market Access, and Public Affairs. The company publishes multiple specialized news outlets including OMaR Osservatorio Malattie Rare (founded 2010, first Italian press agency for rare diseases), OTA Osservatorio Terapie Avanzate (2019, advanced therapies think tank), OSSFOR Osservatorio Farmaci Orfani (2016, orphan drugs research center), OSN Osservatorio Screening Neonatale (2018, neonatal screening portal), and Sperimentazionicliniche.it (2018, clinical trials portal). These publications are complemented by consulting services targeting Patient Associations, Institutions, and Pharmaceutical Companies, along with events like Premio OMaR (communication award) and AT2 (science-show on advanced therapies).

Differentiator

Problem solved

Functional benefit

Products and services

• OMaR Osservatorio Malattie Rare First and only Italian press agency dedicated to rare diseases and rare tumors; provides free, scientifically correct information on rare diseases to patients, physicians, and public decision-makers.
• OTA Osservatorio Terapie Avanzate Independent journalism news outlet and think tank dedicated to advanced therapies (gene therapy, cell therapy, CRISPR editing, CAR-T); produces scientifically accurate, fake-free information on innovative treatments.
• OSSFOR Osservatorio Farmaci Orfani First permanent research center and think tank entirely dedicated to rare diseases and orphan drugs; publishes annual reports and quaderns on governance and sustainability of rare disease treatments.
• OSN Osservatorio Screening Neonatale Online journalism portal dedicated to neonatal screening programs; provides free, scientifically accurate information in Italian about neonatal screening and rare diseases it can diagnose.
• Sperimentazionicliniche.it Journalism portal dedicated to clinical research in Italy offering news and the Clinical Map service—a free search engine allowing Italian users to search clinicaltrials.gov in Italian with approximately 45,000 translated search terms.
• RareLab Communication Services Strategic consulting including content production, media relations, brand identity creation, digital campaigns, video production, press office, social media marketing, and event organization for rare disease stakeholders.
• RareLab Patient Advocacy Services Strategic advocacy services to increase rare disease patients' public representation capacity and weight in decision-making processes through customized advocacy strategies.
• RareLab Public Affairs Services Political-institutional analysis, legislative monitoring, stakeholder mapping, policy analysis, institutional accreditation, partnership building, and lobbying services to transform words into regulatory acts.
• RareLab Market Access Services Strategic consulting integrating traditional market access and public affairs activities with patient empowerment and communication to accelerate access to new therapies.
• RareLab Editorial Services Journalistic and editorial content production both online and offline, including publications, guides, white papers, and specialized medical journalism for rare disease stakeholders.
• RareLab Digital Services Digital formats including patient-doctor meetings, expert Q&A, clinical-stakeholder boards, webinars, media tutorials, distance learning (FAD), and virtual encounters.
• Premio OMaR Annual award for communication on rare diseases and rare tumors; recognizes journalists, patient associations, and communication campaigns.
• Reshape Podcast First Italian podcast entirely dedicated to advanced therapies and technological innovations transforming healthcare.
• Advanced Talks on Advanced Therapies (AT2) Science-show format where advanced therapy experts discuss promises and challenges of innovative therapies.
• retreAT Policy shaping project on advanced therapies sustainability, developed over 18 months with five thematic tables culminating in a two-day event in Rome.
• Sportello Legale OMaR Legal helpdesk service providing personalized legal consultations to rare disease patients.

Quantifiable outcome

• 300+ projects completed for pharmaceutical companies
• +3 more outcomes

Named customers21 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

Feature5 records

Partnerships

Ten partnerships are on record, tiered core and minor.

• Fondazione TelethoncoreStrategic or Co-development PartnerFondazione Telethon provides patronage to Osservatorio Terapie Avanzate OTA and supports their initiatives including AT2 events and podcast Reshape. Represents a key partnership for scientific credibility and reach in the advanced therapies field.
• CREA SanitàcoreStrategic or Co-development PartnerCREA Sanità (Centro per la Ricerca Economica Applicata in Sanità) co-founded OSSFOR with OMaR in 2016, providing research and economic analysis expertise for the think tank on orphan drugs.
• SIMMESNcoreStrategic or Co-development PartnerItalian Society for the Study of Metabolic Hereditary Diseases and Screening, co-promoter of Osservatorio Screening Neonatale OSN project launched in 2018.
• Rete MetabERNcoreStrategic or Co-development PartnerEuropean Reference Network for metabolic diseases, partner in Osservatorio Screening Neonatale OSN project.
• Giulio D'AlfonsominorStrategic or Co-development PartnerCo-initiator of sperimentazionicliniche.it portal launched in 2018 along with Ilaria Ciancaleoni Bartoli and Francesco Macchia.
• Ospedale Pediatrico Bambino GesùminorStrategic or Co-development PartnerPediatric hospital partner for The RareSide 2022 social talk campaign, contributing to awareness initiatives.
• UILDM Unione Italiana Lotta alla Distrofia MuscolareminorStrategic or Co-development PartnerPatient organization partner for The RareSide 2022 campaign, representing muscular dystrophy patients.
• Uno Sguardo Raro - Rare Disease International Film FestivalminorStrategic or Co-development PartnerFilm festival partner for The RareSide 2022 campaign, promoting rare disease awareness through visual arts.
• FERPI Federazione Relazioni Pubbliche ItalianaminorStrategic or Co-development PartnerItalian Federation of Public Relations provides patronage for The RareSide social talk campaign.
• Alleanza Malattie Rare AMRcoreStrategic or Co-development PartnerTechnical permanent table established July 4, 2017 at Chamber of Deputies, including 90+ patient associations coordinated by OSSFOR for policy advocacy.

Scale indicators8 records

Recent moves6 records

Expansion highlights5 records

Broad incumbents

• Ogilvy Health: Global health communications and advertising agency with patient engagement, PR, and public affairs practices serving pharma. Competes with RareLab for pharma engagement and patient advocacy budgets at international scale.
• McCann Health: Global healthcare communications network offering creative, medical, and patient engagement services to pharma. Comparable as a broad incumbent serving the same pharma clients on market access and patient advocacy work.
• Publicis Health: Global health communications network offering medical affairs, patient engagement, and public relations to pharma. Comparable because it addresses the same pharma communications, patient advocacy, and policy shaping needs, though at much larger enterprise scale.
• Havas Health & You: Global health communications network offering public relations, medical education, and patient engagement services to pharma. Comparable because it competes head-to-head with RareLab for pharma market access and patient advocacy mandates, although at global scale rather than Italian rare disease niche.
• BCW (Burson Cohn & Wolfe): Global communications agency with strong public affairs and health practice. Comparable as a competitor for pharma public affairs, market access, and patient advocacy engagements, especially on policy-shaping work.
• Weber Shandwick (Health): International PR and communications agency with a dedicated health practice serving pharma and biotech on patient engagement, market access, and corporate communications. Comparable as a global competitor for the same pharma communications and advocacy business.
• Edelman (Health): Global PR firm with significant health and rare disease practice serving pharma in policy, communications, and patient advocacy. Comparable because it offers the same combined communication + public affairs + market access bundle to large pharma clients, though at much broader scale.

Emerging players

• Medscape (WebMD/Medscape): Major medical news and professional education platform serving clinicians and pharma. Comparable to OMaR and OTA as a specialized medical journalism and information platform, but at global scale rather than Italian rare disease niche.

Direct peers

• Springer Healthcare: Medical communications and publishing business within Springer Nature, offering pharma services in medical affairs, publications, and patient engagement. Comparable because it overlaps with RareLab's combination of medical publishing, pharma communications, and patient-focused content.

Others

• EURORDIS: European Organisation for Rare Diseases, a non-governmental alliance representing 1,000+ rare disease patient associations across Europe. Comparable because it operates in the same rare disease patient advocacy and policy-shaping space as RareLab's AMR Alleanza, though as a non-profit rather than a for-profit consulting firm.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks6 records

Key highlights6 records

Customer concentration

Compliance1 record

Revenue estimate

Valuation estimate

Number of profiles

Profiles6 records

Subsidiaries6 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 Rarelab