ApoyoDravet
ApoyoDravet is a Spanish non-profit association declared of public utility that supports families affected by Dravet Syndrome and rare epilepsies through the INDRE research network, social services, and education programs. It is funded by donations, memberships, and a solidarity store, and coordinates over 50 researchers across 11 groups.
- Company typePrivate
- Founded-
- HeadquartersSan Sebastián (Donostia), Spain
- Headcount1–10
- GTM typeB2C
- OfferingServices
What ApoyoDravet does
ApoyoDravet is a Spanish non-profit association, declared of public utility, founded by families of patients and operating from San Sebastián (Guipúzcoa) in the Basque Country since 2016. The association is run with approximately 6 employees and serves the community affected by Dravet Syndrome and rare epilepsias through a combination of scientific research promotion, family support services, and awareness activities. Its mission centers on accelerating cures and improving the quality of life of affected families in Spain and, increasingly, through international collaborations.
The core operational platform is the INDRE international research network (Red Internacional de Investigación en Síndrome de Dravet y Epilepsia Refractaria), which the association leads and which coordinates 11 research groups and over 50 researchers across universities, hospitals, research centers, and biotech companies. Surrounding INDRE, ApoyoDravet operates a portfolio of branded programs: EpiHum for scientific dissemination (podcasts, online sessions, humanized science), the OSCER Observatory on rare epilepsias, a Social Research Unit on Epilepsias established with Universidad Nebrija's Centro de Investigación Nebrija en Cognición (CINC), a Technology Program oriented to affected individuals, a Servicio de Información Orientada (SIO), a cognitive intervention digital platform, and an annual research congress. Cumulative disclosed investment since 2016 includes 554,764 euros of the association's own funds in research projects, 1,800,000 euros in third-party contributions to research, 1,000,000 euros in promotion services to 46 research centers, and 342,504 euros in social intervention.
Revenue is generated entirely through non-commercial streams: individual donations (over 200 donors) and corporate and institutional sponsorships (14 named collaborators including Biocodex, Nutricia, Zogenix, Jazz Pharma, GW Pharma, Banco Santander, La Caixa, Kutxa, and Quaes), annual membership subscriptions, and sales from an online Tienda Solidaria (solidarity store) accepting credit card and PayPal. The organization also administers third-party research contributions routed to INDRE-affiliated projects and earns promotion service income from research centers. Distribution of services and engagement occurs through a multi-channel footprint including a website, social media (Facebook, Instagram, X, LinkedIn, YouTube), the EpiHum podcast, awareness campaigns such as International Dravet Day (June 23), a mountain ambassador program, and an inclusive education monograph series produced with UPV/EHU's INKLUNI group.
ApoyoDravet firmographics
Firmographics- Name
- ApoyoDravet
- Legal name
- Asociación ApoyoDravet
- Website
- https://apoyodravet.eu
- Company type
- Private
- Operating status
- Operating
- Headcount range
- 1–10 employees
- Short description
- ApoyoDravet is a Spanish non-profit association declared of public utility that supports families affected by Dravet Syndrome and rare epilepsies through the INDRE research network, social services, and education programs. It is funded by donations, memberships, and a solidarity store, and coordinates over 50 researchers across 11 groups.
- Ownership category
- akta.pro rank
ApoyoDravet industry classification
Industry- Product category
- Patient Advocacy and Rare Disease Support Services
- NAICS
- Social Advocacy Organizations (8133), Services for the Elderly and Persons with Disabilities (624120), Individual and Family Services (6241)
- SIC
- Services-Social Services (8300), Services-Commercial Physical & Biological Research (8731)
- akta.pro primary industry
- Disability Rights & Accessibility Advocacy (BPAGAFAF)
- akta.pro secondary industries
- eCOA/ePRO/eDiary & Patient-Facing Data Collection (HLACAOAB), Education Access & EdTech for Equity (Low-cost Learning, Skills Platforms) (BPAGALAH)
Keywords
Where ApoyoDravet is headquartered
LocationHeadquarters
- HQ city
- San Sebastián (Donostia)
- HQ country
- Spain
- HQ region
- Europe
Offices1 record
Markets served
ApoyoDravet business model
Business model- GTM type
- B2C
- Offering type
- Services
- Cost components
- Personnel, Operations, Technology or R&D, Marketing or Sales, Others
Revenue model
- Donations and Membership Fees: ApoyoDravet generates revenue primarily through individual and corporate donations. Individual donors number over 200, and the association has 14 enterprise and institutional collaborators. Donations are stated to carry fiscal benefits for donors.
- Solidarity Store (Tienda Solidaria): The association operates an online storefront selling solidarity merchandise. Products are shipped domestically and internationally, with delivery in 2-6 business days. Payment is accepted via credit card and PayPal.
- Third-Party Funding to Research Projects: The association facilitates and administers external financial contributions directed toward scientific research projects. Third-party contributions to ApoyoDravet projects total 1,800,000 euros.
Pricing tiers
| Model | Billing | Price |
|---|---|---|
| Subscription | Annual | Donation-based membership |
Go-to-market motion1 record
Distribution channels3 records
Marketing channels8 records
ApoyoDravet product offering
Product offeringCore offering
ApoyoDravet is a non-profit association promoting scientific research and providing social support for people affected by Dravet Syndrome and rare epilepsies. It operates the INDRE international research network, runs a solidarity e-commerce store, provides technology and social programs for families, and disseminates research through channels such as EpiHum and OSCER observatory.
Product overview
ApoyoDravet is a non-profit association (declared of public utility) that develops social innovation and scientific research in the field of epilepsias, particularly Dravet syndrome. The organization operates as a unified platform offering research coordination, family support services, and technology programs. The core portfolio includes the INDRE international research network connecting 11 research groups and over 50 researchers, the EpiHum scientific dissemination platform, the OSCER observatory, and the Tienda Solidaria e-commerce store for fundraising. Additional services encompass social research (in partnership with Universidad Nebrija), technology programs for affected individuals, cognitive intervention platforms, information services, and annual research congresses. The organization does not operate as a traditional software product company but rather as a research and support association.
Differentiator
Problem solved
Functional benefit
Brands
- INDRE ApoyoDravet: Red Internacional de Investigación en Síndrome de Dravet y Epilepsia Refractaria – the association's own international scientific research network.
- EpiHum
- Observatorio OSCER
- Tecnología orientada al afectado
Products and services
- INDRE International Research Network
- OSCER Observatory
- EpiHum Science Dissemination Platform
- Tienda Solidaria (Solidarity Store)
- Cognitive Intervention Platform
- Social Research Unit on Epilepsies (with Universidad Nebrija)
- Congress INDRE ApoyoDravet
- SIO Information Service
- Membership Program
Quantifiable outcome
- 554,764 euros invested in own research projects since 2016
- +3 more outcomes
Companies that use ApoyoDravet
Customer profileNamed customers1 record
Segments3 records
Ideal customer profiles3 records
ApoyoDravet technology and API
TechnologyTechnology focussed No
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
ApoyoDravet partnerships and signals
Strategic signalPartnerships
Seven partnerships are on record, tiered core and minor.
- Universidad Nebrija - Centro de Investigación Nebrija en Cognición (CINC)coreApoyoDravet has established a Social Research Unit on Epilepsias with Universidad Nebrija's Cognitive Research Center (CINC), conducting social research on epilepsias in collaboration with the association.
- Universidad del País Vasco (UPV/EHU) - INKLUNI Research GroupcoreCollaboration with the INKLUNI research group from UPV/EHU on inclusive education research for students with rare diseases. ApoyoDravet is an active collaborator, contributing contextual knowledge and helping orient research proposals toward improvements with direct impact on quality of life of families.
- INDRE - Red Internacional de Investigación en Síndrome de Dravet y Epilepsia RefractariacoreApoyoDravet leads the INDRE International Research Network on Dravet Syndrome and Refractory Epilepsy, coordinating 11 research groups and over 50 researchers across universities, hospitals, research centers, and biotech companies.
- Dravet Syndrome Foundation (Dravet Europa)coreEuropean-level collaboration with other Dravet Syndrome patient organizations represented by Dravet Europa, contributing to the broader international rare epilepsy community.
- Fundación Dravet ArgentinaminorInternational collaboration agreement with Fundación Dravet Argentina, together with Biobide SL, to promote research in Dravet Syndrome through zebrafish models.
- EurordisminorAffiliation with EURORDIS, the European Organisation for Rare Diseases, connecting ApoyoDravet to the broader European rare disease community.
- FederminorAffiliation with FEDER (Federación Española de Enfermedades Raras), the Spanish rare disease federation, representing rare disease patient organizations in Spain.
Scale indicators8 records
Expansion highlights6 records
ApoyoDravet competitors and assessment
Company assessmentBroad incumbents
- EURORDIS - Rare Diseases Europe: Large European umbrella organization representing over 1,000 rare disease patient groups. Comparable as a rare disease advocacy platform of which ApoyoDravet is an affiliate; broader in scope across all rare diseases rather than a single condition.
- FEDER - Federación Española de Enfermedades Raras: Spanish federation for rare diseases that ApoyoDravet is affiliated with. Comparable as a national rare disease advocacy body, but operates across all rare diseases rather than specializing in Dravet Syndrome.
- International League Against Epilepsy (ILAE): World's leading professional association for epilepsy clinicians and researchers. Comparable as a convener of epilepsy research and clinical guidelines, but a professional/scientific society rather than a patient advocacy group.
- Epilepsy Foundation (US): One of the largest US epilepsy patient advocacy organizations, supporting research, education, and patient services. Comparable as a research-funding and patient-support nonprofit in the epilepsy space, but operates across all epilepsies rather than rare refractory forms.
Regional players
- Dravet Syndrome UK: UK-based charity for Dravet Syndrome families that funds research and provides family support. Comparable in mission and disease focus, but operates primarily in the United Kingdom.
- Fundación Dravet Argentina: Latin American Dravet Syndrome patient organization collaborating with ApoyoDravet and Biobide. Comparable in mission and disease focus, but operates primarily in Argentina rather than Europe.
Direct peers
- Dravet Syndrome Foundation (Dravet Foundation US): The leading US-based patient advocacy organization dedicated to Dravet Syndrome. Directly comparable as a family-driven nonprofit that funds research, supports affected families, and operates a scientific grants program for the same rare disease.
- Dravet Europa: European-level coalition of Dravet Syndrome patient organizations. Directly comparable as a federation of national Dravet associations, including ApoyoDravet, that coordinates European research and advocacy for the same condition.
Market position
Strengths5 records
Weaknesses5 records
Competitive moat5 records
Key risks5 records
Key highlights6 records
Customer concentration
ApoyoDravet social profiles
Digital presenceApoyoDravet compliance and trust
Trust signalCompliance3 records
ApoyoDravet financial estimates
Financial estimateRevenue estimate
Valuation estimate
ApoyoDravet leadership team
Management profileNumber of profiles
ApoyoDravet funding detail
Funding detailFunding overview
Funding rounds
Investors
Funding detail is available on the Subscription and Enterprise plan.Contact sales →
ApoyoDravet M&A and investment
M&A and investmentM&A
Investments
M&A and investment is available on the Subscription and Enterprise plan.Contact sales →
Frequently asked questions about ApoyoDravet
What does ApoyoDravet do?
ApoyoDravet is a non-profit association promoting scientific research and providing social support for people affected by Dravet Syndrome and rare epilepsies. It operates the INDRE international research network, runs a solidarity e-commerce store, provides technology and social programs for families, and disseminates research through channels such as EpiHum and OSCER observatory.
Is ApoyoDravet a public or private company?
ApoyoDravet is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was ApoyoDravet founded?
ApoyoDravet was founded in -1. It employs 1 to 10 people.
Where is ApoyoDravet based?
ApoyoDravet is headquartered in San Sebastián (Donostia), Spain, in the Europe region.
How does ApoyoDravet make money?
Three revenue lines are on record. Donations and Membership Fees are the primary driver. The others are solidarity Store (Tienda Solidaria) and third-Party Funding to Research Projects.
Who are ApoyoDravet's main competitors?
Broad incumbents on record are EURORDIS - Rare Diseases Europe, FEDER - Federación Española de Enfermedades Raras, International League Against Epilepsy (ILAE) and Epilepsy Foundation (US). Regional players are Dravet Syndrome UK and Fundación Dravet Argentina. Direct peers are Dravet Syndrome Foundation (Dravet Foundation US) and Dravet Europa.
Does ApoyoDravet have an API?
No public API is recorded for ApoyoDravet.
What industry is ApoyoDravet in?
ApoyoDravet's product category is Patient Advocacy and Rare Disease Support Services. Its primary akta.pro industry code is BPAGAFAF, Disability Rights & Accessibility Advocacy, with a secondary code of HLACAOAB, eCOA/ePRO/eDiary & Patient-Facing Data Collection. Its NAICS code is 8133 and its SIC code is 8300.