ALAPA - Alianza Argentina de Pacientes

What ALAPA - Alianza Argentina de Pacientes does

ALAPA (Alianza Argentina de Pacientes) is a non-profit civil association headquartered in Buenos Aires, Argentina, that operates as the country's only national-level, federally active patient alliance for rare diseases (EPOF), genetic diseases, chronic and degenerative illnesses, disabilities, and undiagnosed patients. Founded in 2019 with a lean team of 9 (7 directors covering projects, programs, communications, scientific direction, health research networks, genomics/translational research, and administration), the organization serves more than 100 member patient organizations representing over 500 different pathologies and indirectly supports the estimated 3.5-4 million Argentines living with rare diseases — 70% of whom are children. Services are provided free of charge and include direct patient accompaniment, mental health support (virtual therapeutic treatments), diagnostic guidance, Unique Disability Certificate (CUD) assistance, administrative and legal claims for medication and treatment access, education and training programs, and a federal itinerant workshop program ('Conociendo las EPOF por la Argentina') that travels across provinces.

ALAPA's business model is donation-and-sponsorship funded rather than revenue-generating. It accepts individual donations via MercadoPago and receives corporate support from pharmaceutical companies including Sanofi, Roche, Medison, Pint Pharma, Biosidus, Adium, and BioMarin, alongside institutional partnerships with hospitals (Hospital Garrahan, FLENI), universities (UBA Exactas, UBA Law Faculty), the Academia Nacional de Medicina, and international bodies (ULAPA, PARLASUR, Rare Diseases International, WHO). The organization does not develop or sell technology products; its principal platforms are the in-person federal jornada program, virtual mental health services, the digital 'Biblioteca de Patologías' resource library, and two research consortia — UNIVITEC (rare-disease research) and CRIO (Consorcio de Referencia en Investigación Oncopediátrica, pediatric oncology research). GTM motion is community-led and event-driven, anchored by multi-channel awareness (Instagram, Facebook, X, LinkedIn, YouTube, blog, newsletter) and culminating in direct patient and legislative engagement. ALAPA's most significant strategic milestone is its contribution to the first-ever EPOF Law passed by the Buenos Aires City Legislature in November 2025.

Name

ALAPA - Alianza Argentina de Pacientes

Legal name

Alianza Argentina de Pacientes (ALAPA)

Website

https://alianzapacientes.org

Company type

Private

Operating status

Operating

Headcount range

1–10 employees

Short description

ALAPA is a Buenos Aires-based non-profit patient alliance representing 100+ organizations and 500+ rare, genetic, and chronic disease pathologies across Argentina. It delivers free patient accompaniment, mental-health support, and federal advocacy, funded by donations and pharmaceutical sponsorships.

Ownership category

akta.pro rank

Headquarters

HQ city

Buenos Aires

HQ country

Argentina

HQ region

Latin America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Others

Revenue model

1. Donations: ALAPA accepts donations through MercadoPago platform (link: mercadopago.com.ar/alapadonaciones) to support their operations and programs.

Go-to-market motion2 records

Distribution channels4 records

Marketing channels9 records

Core offering

ALAPA is a non-profit civil association that provides direct accompaniment, orientation, mental health services, legal-administrative support, and education to patients with rare, genetic, chronic, and disabling diseases across Argentina. It operates a federal itinerant outreach program traveling to multiple provinces, coordinates a network of more than 100 patient organizations covering over 500 pathologies, and advocates for healthcare policies including the EPOF Law.

Differentiator

Problem solved

Functional benefit

Products and services

• Conociendo las EPOF por la Argentina

Quantifiable outcome

• ALAPA has worked with over 500 different pathologies in the last seven years
• +2 more outcomes

Named customers3 records

Segments4 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

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

• Lima Declaration OrganizationsmajorStrategic or Co-development Partner · 25 February 2025ALAPA co-signed the Lima Declaration along with 20+ Latin American patient organizations (including APPEL Peru, FAME Chile, FEDIMURA Ecuador, FERPOF Ecuador, FEPER Peru, and others) advocating for health as a fundamental right.
• OMS (Organización Mundial de la Salud)majorStrategic or Co-development Partner · 1 January 2025ALAPA advocates for Argentina to maintain membership in the WHO, which approved a resolution declaring rare diseases a global health priority. ALAPA signed a letter to the Minister of Health opposing Argentina's withdrawal from WHO.
• Municipalidad de BolívarminorStrategic or Co-development Partner · 14 December 2024Local government partnership for the Conociendo las EPOF por la Argentina jornada held at CRUB (Centro Regional Universitario de Bolívar).
• ULAPA (Unión Latinoamericana de Pacientes)coreStrategic or Co-development PartnerALAPA actively participates in ULAPA, a Latin American union of patient organizations, contributing to regional advocacy efforts for health rights and rare disease policies across Latin America.
• PARLASURmajorStrategic or Co-development PartnerALAPA collaborates with PARLASUR (Parlamento Suramericano) on initiatives related to healthcare access, medications, genetic studies, and health equity in the Latin American region.
• UNIVITECcoreStrategic or Co-development PartnerUNIVITEC is a research consortium focused on rare diseases that collaborates with ALAPA on scientific projects and research initiatives for patients with rare, genetic, and chronic diseases.
• CRIO (Consorcio de Referencia en Investigación Oncopediátrica)coreStrategic or Co-development PartnerALAPA co-creates and participates in CRIO, a consortium focused on pediatric oncology research, including organizing the I Ateneo del CRIO with the Academia Nacional de Medicina.
• Rare Diseases InternationalcoreStrategic or Co-development PartnerALAPA participates in Rare Diseases International, with Director Florencia Braga Menéndez presenting at annual meetings in Nairobi, Kenya about the situation of rare disease patients in Argentina.
• Academia Nacional de Medicina - IMEX CONICETmajorStrategic or Co-development PartnerALAPA collaborates with the Academia Nacional de Medicina on research projects including the II Ateneo del CRIO consortium meetings held at their facilities.
• FLENIminorStrategic or Co-development PartnerFLENI (Fundación para la Lucha contra las Enfermedades Neurológicas de la Infancia) partners with ALAPA as part of institutional alliances for patient care and research.
• CZI (Chan Zuckerberg Initiative)minorStrategic or Co-development PartnerChan Zuckerberg Initiative appears as an institutional ally supporting ALAPA's mission and programs.
• Exactas UBA (Facultad de Ciencias Exactas y Naturales)minorStrategic or Co-development PartnerPartnership with the Faculty of Exact Sciences at Universidad de Buenos Aires for scientific collaboration and research initiatives.
• Universidad de Buenos Aires - Facultad de DerechominorStrategic or Co-development PartnerALAPA co-organized III Journadas Nacionales 'Discapacidad y Derechos' at the Law Faculty of Universidad de Buenos Aires.
• Hospital GarrahanmajorStrategic or Co-development PartnerALAPA collaborates with Hospital Garrahan, one of Argentina's most important pediatric hospitals. Dr. Pablo Barvosa, a pediatrician specializing in rare diseases at Garrahan, participates in ALAPA programs.
• Sanofi ArgentinaminorGTM or Marketing PartnerPharmaceutical company supporting ALAPA's projects as part of corporate partnerships for rare disease patient support.
• Roche ArgentinaminorGTM or Marketing PartnerPharmaceutical company supporting ALAPA's projects as part of corporate partnerships for rare disease patient support.
• Medison PharmaminorGTM or Marketing PartnerPharmaceutical company supporting ALAPA's projects as part of corporate partnerships for rare disease patient support.
• Pint PharmaminorGTM or Marketing PartnerPharmaceutical company supporting ALAPA's projects as part of corporate partnerships for rare disease patient support.
• BiosidusminorGTM or Marketing PartnerArgentine pharmaceutical company supporting ALAPA's projects as part of corporate partnerships for rare disease patient support.
• AdiumminorGTM or Marketing PartnerPharmaceutical company supporting ALAPA's projects as part of corporate partnerships for rare disease patient support.
• BioMarinminorGTM or Marketing PartnerBiopharmaceutical company supporting ALAPA's projects as part of corporate partnerships for rare disease patient support.
• Sociedad Argentina de CancerologíaminorStrategic or Co-development PartnerALAPA collaborated with Sociedad Argentina de Cancerología on the II Jornada Argentina de Gliomas during Childhood Cancer Awareness Month.
• Grupo Papás y Mamás contra GliomasminorStrategic or Co-development PartnerALAPA worked with this patient organization for the II Jornada Argentina de Gliomas to raise awareness about childhood cancer.

Scale indicators7 records

Recent moves6 records

Expansion highlights6 records

Direct peers

• Rare Diseases International: Global alliance of rare-disease patient organizations — ALAPA is itself a member and Director Florencia Braga Menéndez presents at its annual meetings. Directly comparable as the international umbrella in which ALAPA participates.
• ALIBER (Alianza Iberoamericana de Enfermedades Raras): Ibero-American rare-disease alliance spanning Spain, Portugal, and Latin America. Comparable to ALAPA in regional scope and linguistic positioning, and a natural counterpart for joint advocacy in Spanish-speaking jurisdictions.
• NORD (National Organization for Rare Disorders): US-based umbrella for rare-disease patient organizations, providing advocacy, policy work, and patient support programs. Closest US analogue to ALAPA in federating patient organizations and influencing national rare-disease policy (e.g., US Orphan Drug Act ecosystem).
• FEDER (Federación Española de Enfermedades Raras): Spanish national federation representing patients with rare diseases across all pathologies, with a federal provincial chapter model and active legislative advocacy. Directly comparable to ALAPA in mission, structure (umbrella for hundreds of patient associations), and policy-advocacy focus.
• EURORDIS - Rare Diseases Europe: European umbrella for rare-disease patient organizations, operating federated advocacy across countries and engaging with EU institutions. Comparable to ALAPA in coordinating national alliances, running patient programs, and driving rare-disease legislation (cross-border equivalent of ALAPA's EPOF Law work).
• Genetic Alliance: US-based alliance focused on genetic diseases and rare conditions, federating patient organizations and supporting research. Comparable to ALAPA in combining patient advocacy with research infrastructure (UNIVITEC, CRIO).
• CORD (Canadian Organization for Rare Disorders): Canadian national alliance for rare-disease patients, with provincial reach and policy advocacy focus. Comparable in mission and federated structure to ALAPA, and a model for Anglosphere-style national rare-disease advocacy.
• FADEPOF (Federación Argentina de Enfermedades Poco Frecuentes): Argentine federation of rare-disease patient organizations also operating at the national level in the same country as ALAPA. Directly competing/coexisting with ALAPA in representing the same patient community in Argentina — the most relevant local competitive peer.

Others

• Hospital Garrahan (Patient Support Programs): Argentina's leading pediatric hospital, a strategic partner of ALAPA where rare-disease specialists participate in ALAPA programs. Adjacent ecosystem participant rather than a competing advocate — included because it represents the public-hospital pillar that anchors ALAPA's clinical referral network.

Regional players

• Federación Mexicana de Enfermedades Raras (FEMEXER): Mexican umbrella for rare-disease patient organizations with similar advocacy and federal outreach model. Comparable in Latin American regional context, but operating in Mexico rather than Argentina.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat4 records

Key risks5 records

Key highlights7 records

Customer concentration

• Xx.com/AlapaArgentina
• YouTubeyoutube.com/channel/somosalapa
• Facebookfacebook.com/somosalapa
• LinkedInlinkedin.com/company/somosalapa
• Instagraminstagram.com/somosalapa

Revenue estimate

Valuation estimate

Number of profiles

Profiles7 records

Funding overview

Funding rounds

Investors

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

M&A

Investments

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Frequently asked questions about ALAPA - Alianza Argentina de Pacientes