Disautonomía Chile

What Disautonomía Chile does

Disautonomía Chile is a non-profit patient advocacy organization (organización sin fines de lucro) founded in 2012 as a support community and formalized in 2016, headquartered in Chile. The organization serves people diagnosed with or suspected of having Autonomic Nervous System Disorders (Trastornos del Sistema Nervioso Autónomo, TSNA — dysautonomia), along with their families and caregivers, across all regions of Chile. Its core offerings include the Servicio de Información y Orientación SIO (a free information and orientation service), a virtual community (Facebook group), an online forum, free psychological attention, the 'Sal por favor!' podcast, the 'Mi dis y yo' testimonial book series (published in 2022 and 2023), educational materials, and the annual 'Dale la Mano a la Disautonomía' awareness campaign. The organization also assists patients with obtaining disability credentials and navigating medication access through its Convenio Farmacia Ética and CENABAST pharmacy arrangements.

The organization operates on a WordPress-based website (disautonomia.cl) and leverages social media platforms (Facebook, Instagram, TikTok, YouTube, Twitter/X, LinkedIn) for community engagement and awareness. It does not have a proprietary technology platform. Its business model is donation- and grant-based: all services are provided free of charge to patients, families, and caregivers. Disautonomía Chile is part of multiple umbrella federations (FECHER, FENPOF CHILE, ACHAP) and the Mesa de Abordaje ERPOH coordinated by Chile's Ministry of Health, positioning it as a key stakeholder in the implementation of the 2025 ERPOH Law (Ley N°21.743) for rare diseases. The organization maintains international partnerships with dysautonomia organizations in Guatemala, Panama, and across Latin America.

Name

Disautonomía Chile

Legal name

Disautonomía Chile

Website

https://disautonomia.cl

Company type

Private

Founded year

2012

Operating status

Operating

Headcount range

1–10 employees

Short description

Disautonomía Chile is a Chilean non-profit patient advocacy organization founded in 2012 and formalized in 2016 that supports people with Autonomic Nervous System Disorders (dysautonomia) and their families through free information services, community forums, a podcast, educational materials, and policy advocacy for rare disease rights.

Ownership category

akta.pro rank

Product category

Patient Advocacy Services

NAICS

Other Individual and Family Services (624190), Voluntary Health Organizations (813212)

SIC

Services-Membership Organizations (8600)

akta.pro primary industry

Autonomic Disorders (Dysautonomia) (HLAKAIAN)

akta.pro secondary industry

Maternal, Newborn, Child & Adolescent Health (MNCAH) NGOs (HLAJAKAG)

Keywords

• Patient advocacy services
• Dysautonomia support
• Patient community support
• Health education resources
• Nonprofit health organization

Headquarters

HQ city

Chile

HQ country

Chile

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 and grants: As a non-profit organization established in 2016, Disautonomía Chile operates primarily through donations and potentially public or private grants. The organization provides all services free of charge to patients, families, and caregivers affected by dysautonomia.

Go-to-market motion1 record

Distribution channels1 record

Marketing channels6 records

Core offering

Disautonomía Chile is a non-profit patient advocacy organization that provides free information, orientation, psychological support, community engagement, and educational resources for people diagnosed with autonomic nervous system disorders (disautonomía) and their families in Chile. The organization operates an active community of approximately 3,000 members and delivers awareness campaigns, policy advocacy, and digital educational resources including a podcast and a published book.

Product overview

Disautonomía Chile is a nonprofit patient advocacy organization (founded 2012, formalized 2016) that offers a coordinated suite of services focused on support, education, advocacy, and community-building for people with Autonomic Nervous System Disorders (TSNA) in Chile. Its core offerings include the Servicio de Información y Orientación SIO (free information/orientation service), the virtual Comunidad Disautonomía Chile (peer support community), the 'Sal por favor!' podcast, the 'Mi dis y yo' testimonial book series, the annual 'Dale la Mano a la Disautonomía' awareness campaign, and educational materials covering diagnosis, symptoms, triggers, healthcare navigation, and disability credentials. The organization also operates a community forum for member discussions.

Differentiator

Problem solved

Functional benefit

Products and services

• Servicio de Información y Orientación (SIO) Free information and orientation service that supports patients and families affected by autonomic nervous system disorders (disautonomía), helping them navigate diagnosis, treatment, and daily living with the condition.
• Comunidad Disautonomía Chile Online and in-person peer support community that brings together people with dysautonomia and their families, providing mutual support and shared experience across Chile.
• Foro Disautonomía Chile Online discussion forum where patients and families can post questions, share experiences, and exchange information about autonomic nervous system disorders.
• Atención Psicológica Gratuita Free psychological support service providing emotional and mental health care for patients and family members affected by dysautonomia.
• Podcast "Sal por favor!" Educational podcast that addresses the lived experience of people with dysautonomia, providing information, awareness, and patient voices to the broader community.
• Libro "Mi dis y yo" Published book that documents and shares the personal experience of living with dysautonomia, serving as an educational resource for patients, families, and the general public.

Quantifiable outcome

• Successfully advocated for fludrocortisone and midodrine to enter CENABAST pharmacy baskets, opening channels for medication accessibility

Segments1 record

Ideal customer profiles2 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Ten partnerships are on record, tiered core and minor.

• FECHER (Federación Chilena de Enfermedades Raras)coreOthersDisautonomía Chile is part of or collaborates with FECHER, the Chilean Federation of Rare Diseases, which is an umbrella organization representing multiple patient organizations and advocating for improved healthcare policies for rare diseases in Chile.
• FENPOF CHILE (Federación de Enfermedades Poco Frecuentes)coreOthersCollaboration with FENPOF CHILE, the Federation of Rare Diseases in Chile, which brings together organizations working on rare disease advocacy and policy.
• ACHAP (Alianza Chilena de Agrupaciones de Pacientes)coreOthersPartnership with ACHAP, the Chilean Alliance of Patient Groups, for broader advocacy and healthcare policy engagement.
• CERPOHCHI (Congreso de Enfermedades Raras, Poco Frecuentes y Huérfanas Chile)coreStrategic or Co-development PartnerDisautonomía Chile collaborates with CERPOHCHI in organizing educational events and congresses for healthcare professionals, patient organizations, and leaders on rare diseases. Events include educational jornadas in Puerto Montt, Rancagua, and La Serena in 2025.
• CENABAST (Central de Abastecimiento del Sistema Nacional de Servicios de Salud)coreStrategic or Co-development PartnerDisautonomía Chile worked with CENABAST to successfully include fludrocortisone and midodrine in pharmacy baskets, opening channels for medication accessibility for patients with dysautonomia in Chile's public healthcare system.
• Disautonomía GuatecoreStrategic or Co-development PartnerInternational partner organization for the 'Dale la Mano a la Disautonomía' campaign. Guatemala-based organization collaborating on Latin American dysautonomia awareness efforts.
• Fundación Disautonomía PanamácoreStrategic or Co-development PartnerInternational partner organization for the 'Dale la Mano a la Disautonomía' campaign. Panama-based foundation collaborating on Latin American dysautonomia awareness efforts.
• Disautonomía LatinoaméricacoreStrategic or Co-development PartnerInternational network partner for the 'Dale la Mano a la Disautonomía' campaign, representing broader Latin American collaboration on dysautonomia awareness and advocacy.
• Oficina Nacional de CCC y EPOF (Ministerio de Salud Chile)coreOthersDisautonomía Chile participates in the Mesa de Abordaje ERPOH coordinated by the National Office of Complex Chronic Conditions and Rare Diseases within Chile's Ministry of Health, contributing to policy development for rare diseases.
• Farmacia ÉticaminorChannel Partner/ Reseller/ DistributorConvenio Farmacia Ética is a pharmacy agreement that provides patients with dysautonomia access to medications through a special arrangement facilitated by the organization.

Scale indicators2 records

Recent moves6 records

Expansion highlights5 records

Direct peers

• Disautonomía Guatemala: Guatemalan counterpart patient advocacy organization for dysautonomia and a named international partner in Disautonomía Chile's 'Dale la Mano a la Disautonomía' campaign. Direct peer operating the same disorder-vertical advocacy model in a different LATAM country.
• Disautonomía Latinoamérica: Latin American regional network for dysautonomia advocacy and an active partner of Disautonomía Chile in awareness campaigns. Direct peer operating at a regional aggregation level on the same condition.
• DINET (Dysautonomia Information Network): US-based patient advocacy and information organization for dysautonomia. Direct peer operating the same community-support, education, and physician-referral model as Disautonomía Chile, primarily serving North American patients.
• Dysautonomia International: The leading global patient advocacy organization for dysautonomia, focused on awareness, education, research funding, and physician education. Direct peer given near-identical mission around autonomic nervous system disorders, with broader geographic reach.
• Fundación Disautonomía Panamá: Panamanian foundation and partner organization for dysautonomia awareness and advocacy in Latin America. Direct peer with the same condition-vertical mission and active collaboration with Disautonomía Chile.

Broad incumbents

• FENPOF Chile (Federación de Enfermedades Poco Frecuentes): Chilean Federation of Rare Diseases with similar national advocacy and policy remit. Broad incumbent in the same domestic rare-disease advocacy space and a partner of Disautonomía Chile.
• NORD (National Organization for Rare Disorders): Largest US rare-disease advocacy organization, providing a benchmark for the scale, federated model, and policy machinery that a mature Chilean equivalent could evolve into. Broad incumbent in the same broader rare-disease advocacy category.
• ACHAP (Alianza Chilena de Agrupaciones de Pacientes): Chilean Alliance of Patient Groups engaged in broader healthcare policy advocacy. Adjacent peer representing a wider cross-condition patient-group coalition in which Disautonomía Chile participates.
• FECHER (Federación Chilena de Enfermedades Raras): Chilean Federation of Rare Diseases, an umbrella organization in which Disautonomía Chile participates. Broad incumbent in the same domestic advocacy space, representing multiple rare-disease organizations at the national policy level.

Emerging players

• DINAMO Chile: Chilean patient movement organization focused on disability rights and chronic disease advocacy. Emerging peer in the domestic non-profit health-advocacy ecosystem with overlapping policy and rights-advocacy themes.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat4 records

Key risks6 records

Key highlights6 records

Customer concentration

• Xx.com/Disautonomiacl
• YouTubeyoutube.com/@disautonomiacl
• Facebookfacebook.com/disautonomia.cl
• LinkedInlinkedin.com/company/disautonomiacl
• Instagraminstagram.com/disautonomiacl
• TikToktiktok.com/@disautonomia.cl

Revenue estimate

Valuation estimate

Number of profiles

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 Disautonomía Chile