Plataforma de Organizaciones de Pacientes

What Plataforma de Organizaciones de Pacientes does

Plataforma de Organizaciones de Pacientes (POP) is a Spanish non-profit umbrella organization founded in 2014 and based in Madrid, federating 50 state-level patient organizations that collectively represent more than 2,040 associations, 1,147,358 individual patients, 63,488 volunteers, and 13,158 paid workers across Spain. Its mission is to advance the effective participation of chronic and rare disease patients in Spain's health and social policy. POP operates as a multi-service platform: it runs the Clínica Legal (a free legal orientation service responding within 15 working days), the Repositorio POP training platform (built in collaboration with AEMPS), the annual Congreso POP (400+ attendees, 40+ speakers), the V Premios POP awards, the Observatorio de la Atención al Paciente research platform, the Barómetro EsCrónicos annual survey (now in its 7th–8th edition), and supporting data platforms (Datos POP Salud, Crobi, ParticipACCIÓN, #Esenciales). All services are provided free of charge to member organizations and patients.

POP's go-to-market is community-led, expanding by recruiting new state-level patient organizations that meet a geographic-presence threshold (presence in at least 6 of Spain's 17 autonomous communities); three new entities (ADEE, FEAADAH, AEDESEO) joined in June 2026, taking cumulative membership to 50. The organization is funded through membership contributions from its 50 member organizations plus public institutional grants from entities such as AEMPS, the Ministry of Health, the Ministry of Inclusion, and the Ministry of Youth and Childhood. There is no commercial pricing model, no app, and no purchased API or SDK offering. Technology is built on conventional web infrastructure (WordPress CMS, Mailchimp newsletter, dedicated subdomains for training, congress, and data) rather than proprietary platforms. Its core strategic assets are institutional relationships (AEMPS, CIBER, BBMRI-ERIC, EPF, Ministry of Health, Senate Health Commission) and the Barómetro EsCrónicos research series, which together position POP as the only unified chronic-disease patient voice at the national regulatory level in Spain.

Name

Plataforma de Organizaciones de Pacientes

Legal name

PLATAFORMA DE ORGANIZACIONES DE PACIENTES

Website

https://plataformadepacientes.org

Company type

Private

Founded year

2014

Operating status

Operating

Headcount range

1–10 employees

Short description

Plataforma de Organizaciones de Pacientes (POP) is a Spanish non-profit umbrella body that federates 50 state-level patient organizations representing 2,040+ associations and 1.1M+ chronic and rare disease patients, providing free legal clinic, training, research, and policy advocacy services.

Ownership category

akta.pro rank

Product category

Patient Advocacy and Healthcare Policy Services

NAICS

Social Advocacy Organizations (8133), Other Social Advocacy Organizations (813319), Civic and Social Organizations (81341), Human Rights Organizations (813311)

SIC

Services-Membership Organizations (8600), Services-Social Services (8300)

akta.pro primary industry

Consumer Rights & Public Interest Advocacy (BPAGAFAK)

Keywords

• Patient advocacy services
• Health policy representation
• Chronic disease support
• Patient organization network
• Healthcare training programs

Headquarters

HQ city

Madrid

HQ country

Spain

HQ region

Europe

Offices1 record

Markets served

GTM type

B2B

Offering type

Services

Cost components

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

Revenue model

1. Membership fees: POP is funded by membership contributions from its 50 member organizations (patient organizations), which in turn represent over 2,040 associations across Spain. The organization also receives public institutional funding for its policy advocacy, training, and research activities.

Pricing tiers

Go-to-market motion1 record

Distribution channels3 records

Marketing channels8 records

Core offering

Plataforma de Organizaciones de Pacientes (POP) is a Spanish non-profit umbrella organization that groups 50 state-level patient organizations representing more than 2,040 associations and over 1.14 million individuals. It delivers collective policy advocacy before health authorities, free legal orientation (Clínica Legal), training for member organizations, patient-experience research (Barómetro EsCrónicos), an annual congress, and the Premios POP awards program.

Product overview

Plataforma de Organizaciones de Pacientes (POP) is a non-profit umbrella organization that groups patient organizations at the state level in Spain. The organization operates as a multi-service platform offering advocacy, research, training, and legal support services to its member organizations. Its core offerings include the Clínica Legal (free legal orientation service), the annual Congreso POP, the Premios POP awards, the Repositorio POP training platform, the Observatorios de la Atención al Paciente research platform, and various data platforms including Crobi and Datos POP Salud. The organization also runs initiatives like ParticipACCIÓN, #Esenciales, and publishes the Barómetro EsCrónicos annual survey.

Differentiator

Problem solved

Functional benefit

Brands

• Crobi: Platform that promotes knowledge about the current situation of patients in Spain and contributes to generating effective change in chronic disease management.
• ParticipACCIÓN
• #Esenciales
• Datos POP Salud
• Observatorio de la Atención al Paciente
• Congreso POP
• Premios POP
• Clínica Legal
• Repositorio POP

Products and services

• Clínica Legal Free legal orientation service dedicated to resolving legal queries related to patients' illnesses, including difficulties accessing treatments and medical or social benefits, and discrimination based on illness. Queries submitted via online form are answered by a health law professional within 15 working days.
• Congreso POP (Annual Congress) Annual congress bringing together over 400 attendees including patient organization representatives, healthcare professionals, managers, and industry representatives, with more than 40 speakers.
• Repositorio POP - Formación Online training platform offering educational resources for member entities, including courses on pharmacovigilance, clinical trials, health technology assessment, medicine authorization, drug supply management, and patient participation in PICO Nacional, developed with AEMPS and other institutional partners.
• Premios POP Awards program recognizing the best patient participation initiatives driven by healthcare organizations, centers, institutions, and public administrations in Spain, across six categories.
• Observatorio de la Atención al Paciente Observatory platform producing reports and studies that promote knowledge about the current situation of patients in Spain and contribute to effective change in chronicity management.
• Barómetro EsCrónicos Annual satisfaction and quality of healthcare survey perceived by people with chronic diseases, providing key insights into patient experience and healthcare quality gaps.
• Programa de liderazgo y gestión de organizaciones de pacientes Leadership and management executive education program for patient organizations, co-developed with Universidad de Deusto.
• Newsletter POP Regular email newsletter service via Mailchimp delivering updates on POP's activities, news, publications, and events to subscribers.

Named customers40 records

Segments4 records

Ideal customer profiles2 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature4 records

Partnerships

16 partnerships are on record, tiered core and minor.

• Ministry of Youth and Childhood (INJUVE)coreStrategic or Co-development Partner · 1 July 2026The Secretary of State for Youth and Childhood ( Rubén Pérez) co-hosted with POP President Carina Escobar the event 'Young People and Chronic Illness: Listen, Accompany and Incorporate New Voices' at INJUVE, focusing on youth participation in health policy design.
• CIBER (Consorcio Centro de Investigación Biomédica en Red)coreStrategic or Co-development Partner · 1 June 2026POP and CIBER formalized a general action protocol to promote and boost research in infectious diseases. This collaboration aims to channel patient perspectives into biomedical research conducted by CIBER's network of research areas.
• BBMRI-ERIC (European Research Infrastructure for Biobanking and Biomolecular Resources)minorStrategic or Co-development Partner · 1 June 2026POP joined the Stakeholder Forum – Patients and Citizens' Pillar of BBMRI-ERIC, Europe's research infrastructure for biobanks and biomolecular resources. This provides POP with a voice in European biomedical research governance and data sharing frameworks.
• Ministry of Health of SpaincoreStrategic or Co-development Partner · 1 June 2026The Ministry of Health is a key institutional partner for POP's policy advocacy work. The Secretary of State for Health Javier Padilla participated in the V Premios POP ceremony and engaged in dialogue with POP President Carina Escobar on patient participation. The Ministry is also the recipient of POP's V Premios POP in the Normative category for its work on the Ley de Organizaciones de Pacientes.
• AEMPS (Agencia Española de Medicamentos y Productos Sanitarios)coreStrategic or Co-development Partner · 13 April 2026POP and AEMPS have an ongoing collaboration agreement (prorrogued in April 2026, published in BOE) focused on training, information, and joint work to strengthen patient organizations' knowledge of drug regulation, access, evaluation, and safe use. Activities include training modules on AEMPS's regulatory role, clinical trials, marketing authorization, pharmacovigilance, supply chain management, HTA, compassionate use, and patient participation in PICO Nacional. The collaboration also covers joint educational materials such as guides on infections and antimicrobial resistance. The partnership is considered very positive by POP for opening a stable, practical dialogue with the regulator.
• EPF (European Patients' Forum)coreStrategic or Co-development PartnerPOP is a member of the European Patients' Forum (EPF), the overarching European platform representing patient organizations at EU level. EPF membership enables POP to participate in European policy debates, share best practices, and contribute to EU health legislation.
• ONCE (Organización Nacional de Ciegos Españoles)minorOthersONCE collaborates with POP on shared objectives related to disability and health equity. ONCE is listed as a collaborator in POP's institutional materials.
• LLYC (Llorente & Calderón)minorStrategic or Co-development PartnerLLYC, a communications and public affairs consultancy, is listed as a collaborating entity supporting POP's work. LLYC may provide strategic communication support for POP's institutional campaigns and public positioning.
• GA_P (G&A Partners)minorStrategic or Co-development PartnerGA_P is listed as a collaborating entity of POP, potentially providing pro-bono or discounted professional services.
• Universidad Pontificia Comillas (UCM)minorStrategic or Co-development PartnerUniversidad Pontificia Comillas is listed as a collaborating entity, potentially contributing academic research capacity, student involvement, or joint studies to POP's work.
• Universidad de DeustominorStrategic or Co-development PartnerUniversidad de Deusto co-developed with POP the 'Programa de liderazgo y gestión de organizaciones de pacientes' (leadership and management program for patient organizations), offered as an executive education course.
• IQVIAminorStrategic or Co-development PartnerIQVIA, a global healthcare data and analytics company, collaborates with POP on training activities, notably a workshop on 'From lived experience to evidence-based influence: practical introduction to data and evidence for patient organizations'.
• EIT HealthminorStrategic or Co-development PartnerEIT Health, a European health innovation network funded by the EIT, is listed as a collaborating entity with POP, potentially contributing to innovation projects or training related to chronic disease management.
• EATRIS (European Research Infrastructure for Translational Medicine)minorStrategic or Co-development PartnerEATRIS is listed as a collaborating entity, potentially supporting POP's engagement in translational medicine and clinical research collaboration.
• Ministry of Inclusion, Social Security and MigrationcoreStrategic or Co-development PartnerPOP submitted contributions to the public consultation on the reform of the CUME (economic benefit for care of minors with cancer or serious illness) to this ministry, advocating for families of children with chronic and rare diseases.
• Congress of Deputies / Senate (Health Commission)coreOthersPOP President Carina Escobar testified before the Senate Health Commission to address the impact of the medical strike on chronic disease patients, presenting six urgent measures. POP also submitted contributions to the public consultation on CUME reform, directly influencing legislative processes.

Scale indicators8 records

Recent moves12 records

Expansion highlights4 records

Direct peers

• National Health Council (US): US-based membership organization of patient groups and health-related nonprofits that provides advocacy, policy analysis, and member training. Mirrors POP's value proposition of aggregating patient voices for system-level influence and providing capacity-building to member organizations.
• European Patients' Forum (EPF): EU-level umbrella of patient organizations across disease areas; POP is itself a member. Directly comparable as a membership-based patient advocacy platform representing chronic disease patients at the supranational level, with shared functions in policy advocacy, training, and congress convening.
• National Voices (UK): England-based coalition of health and care charities that convenes patient voices for policy influence. Closely mirrors POP's model of uniting state-scope patient organizations, providing training, and producing evidence on patient experience for health-system advocacy.
• Collectif Interassociatif Sur la Santé (CISS) / France Assos Santé: French national umbrella representing more than 100 patient and health-user associations for policy advocacy and representation. Functions as a near-analogue to POP in another European national health system.
• EURORDIS – Rare Diseases Europe: European umbrella for rare disease patient organizations; POP's own member FEDER is a EURORDIS affiliate. Comparable in mission (patient participation in research and policy), training offerings, and congress activity, though narrower in disease scope.
• Foro Español de Pacientes: Earlier-established Spanish patient umbrella organization that similarly groups patient associations for advocacy and representation. Operates in the same Spanish market with overlapping member types, making it POP's closest domestic direct competitor.

Emerging players

• EUPATI (European Patients' Academy on Therapeutic Innovation): European initiative focused on patient training on medicines R&D, hosted by EPF. Overlaps with POP's Repositorio POP training platform in content (clinical trials, HTA, pharmacovigilance) and audience (patient organizations), making it a thematic competitor in capacity-building.

Others

• The Health Policy Partnership: International health-policy consultancy that produces evidence-based policy outputs in partnership with patient organizations and industry. Adjacent to POP's research and policy-advocacy work, particularly relevant for POP's Datos POP Salud and Observatory outputs.

Regional players

• Alianza General de Pacientes (Spain): Spanish patient advocacy organization operating primarily in Spain with a chronic-disease focus. Competes for the same member organizations and policy interlocutors as POP within the Spanish health system.

Broad incumbents

• International Alliance of Patients' Organizations (IAPO): Global umbrella for patient organizations across diseases and geographies. Operates at a broader international scope than POP but shares the same advocacy, policy-influence, and capacity-building functions, and frequently overlaps with POP's European-level peers.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks6 records

Key highlights6 records

Customer concentration

• Xx.com/pacientespop
• YouTubeyoutube.com/channel/UCXCkQU96HAR1a01X2z9SRnw
• Facebookfacebook.com/pacientesPOP
• LinkedInlinkedin.com/company/plataforma-de-organizaciones-de-pacientes-spanish-patients-platform
• Instagraminstagram.com/pacientesPOP

Compliance1 record

Revenue estimate

Valuation estimate

Number of profiles

Profiles14 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Plataforma de Organizaciones de Pacientes