Duchenne Parent Project España
Duchenne Parent Project España is a Madrid-based non-profit patient advocacy organization founded in 2013 that supports Spanish families affected by Duchenne and Becker muscular dystrophy through psychosocial services, research funding, assistive technology development, and educational programming.
- Company typePrivate
- Founded2013
- HeadquartersMadrid, Spain
- Headcount11–50
- GTM typeB2C
- OfferingServices
What Duchenne Parent Project España does
Duchenne Parent Project España (DPPE) is a non-profit patient advocacy association founded in 2013 in Madrid, Spain, by parents of children affected by Duchenne and Becker muscular dystrophy. The organization operates a community-led go-to-market motion centered on direct family services, awareness campaigns under the #DesafíoDuchenne banner, and an annual International Congress that convenes researchers, clinicians, and affected families. Its core service portfolio includes psychological support, social work, legal orientation, and information services delivered through dedicated phone and email channels, supplemented by educational programs and continuing professional development for healthcare providers.
DPPE's technology footprint consists of the SARA patient registry for tracking Spanish Duchenne and Becker patients, mobile applications for patient registration and walking-test capture (6MWT+), the EXORAPI innovation project, and arm-support assistive devices developed to improve patient mobility. These assets, together with €3.5M+ directed to research projects since founding, position the organization as both a service provider and a research enabler for the Spanish Duchenne community. The association is a member of EURORDIS, FEDER, TREAT-NMD, and the World Duchenne Organization, and holds "Declarada de utilidad pública" status from the Spanish government.
Revenue is generated through individual donations, membership fees (socios), a solidarity merchandise store, corporate partnerships via the "Empresas solidarias" program, and event-based fundraising; cumulative donations totaled €5,346,912.12 between 2013 and December 2023. The organization operates with 16 employees from its Madrid headquarters at C/ Casco Antiguo 12, local B, and is governed by founding families and current leadership without any disclosed parent entity.
Duchenne Parent Project España firmographics
Firmographics- Name
- Duchenne Parent Project España
- Legal name
- Duchenne Parent Project España
- Website
- https://duchenne-spain.org
- Company type
- Private
- Founded year
- 2013
- Operating status
- Operating
- Headcount range
- 11–50 employees
- Short description
- Duchenne Parent Project España is a Madrid-based non-profit patient advocacy organization founded in 2013 that supports Spanish families affected by Duchenne and Becker muscular dystrophy through psychosocial services, research funding, assistive technology development, and educational programming.
- Ownership category
- akta.pro rank
Duchenne Parent Project España industry classification
Industry- Product category
- Patient Advocacy and Rare Disease Support
- NAICS
- Other Individual and Family Services (62419), Other Individual and Family Services (624190)
- SIC
- Services-Membership Organizations (8600), Services-Health Services (8000)
- akta.pro primary industry
- Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)
Keywords
Where Duchenne Parent Project España is headquartered
LocationHeadquarters
- HQ city
- Madrid
- HQ country
- Spain
- HQ region
- Europe
Offices1 record
Markets served
Duchenne Parent Project España business model
Business model- GTM type
- B2C
- Offering type
- Services
Revenue model
- Donations and Fundraising: Primary revenue stream from individual donations, membership fees (socios), and fundraising campaigns such as #DesafíoDuchenne. Total raised €5,346,912.12 from 2013 to 2023.
- Solidarity Store: Sale of solidarity merchandise through the Tienda Solidaria, generating revenue for the association's activities.
- Corporate Partnerships: Revenue from corporate sponsors and solidarity companies (Empresas solidarias) that support the organization financially.
- Events: Revenue from organizing events including the annual International Congress and community fundraising events.
Go-to-market motion1 record
Distribution channels3 records
Marketing channels6 records
Duchenne Parent Project España product offering
Product offeringCore offering
Duchenne Parent Project España is a patient advocacy organization serving families affected by Duchenne and Becker muscular dystrophy in Spain. It provides community support, advocacy, and resources for the neuromuscular disease community. Specific product/service details are not evidenced in the provided input.
Product overview
Duchenne Parent Project España is a non-profit patient organization offering a portfolio of technological products and services focused on improving quality of life for Duchenne and Becker muscular dystrophy patients. The core offerings include a Patient Registry (web and mobile app) for research data collection, the 6MWT+ tool for functional assessment, arm support devices, and the EXORAPI innovation project. The organization also provides family support services, funds research, and organizes educational programs including an annual International Congress.
Differentiator
Problem solved
Functional benefit
Brands
- SARA: Patient registry for Duchenne and Becker patients managed by the organization.
Quantifiable outcome
- €3,500,000+ invested in research funding
- +1 more outcomes
Companies that use Duchenne Parent Project España
Customer profileNamed customers1 record
Segments3 records
Ideal customer profiles1 record
Duchenne Parent Project España technology and API
TechnologyAPI detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
Feature4 records
Duchenne Parent Project España partnerships and signals
Strategic signalPartnerships
Twelve partnerships are on record, tiered core and minor.
- EURORDIScoreMembership in EURORDIS, the European Organisation for Rare Diseases, providing international collaboration and advocacy at the European level for rare disease policy and research.
- FEDERcoreMembership in Federación Española de Enfermedades Raras (FEDER), Spain's primary rare disease federation, enabling coordination with other patient organizations.
- TREAT-NMDcoreMembership in TREAT-NMD network, providing access to international neuromuscular disease research collaborations and best practices.
- World Duchenne Organization (WDO)coreActive membership in the World Duchenne Organization, contributing to and benefiting from international efforts to find treatments and improve care for Duchenne patients globally.
- PlásticosurminorCorporate partner contributing to the Empresas solidarias program, supporting the organization through business activities.
- IVB Wellness LabminorCorporate partner in the Empresas solidarias program, providing support through wellness and health-related business activities.
- WeledaminorCorporate partner in the Empresas solidarias program, contributing to fundraising and awareness efforts.
- IFSA SaludminorHealthcare-related corporate partner supporting the organization through the Empresas solidarias initiative.
- Hoy es el DíaminorCorporate partner in the Empresas solidarias program, contributing to the organization's fundraising activities.
- GgfitsminorCorporate partner supporting through the Empresas solidarias program with gifts and merchandise.
- Pádel Pro ShopminorCorporate partner in the Empresas solidarias program, supporting through sports-related business activities.
- Imprenta OnlineminorCorporate partner providing printing services for the organization as part of the Empresas solidarias program.
Scale indicators2 records
Recent moves5 records
Expansion highlights4 records
Duchenne Parent Project España competitors and assessment
Company assessmentDirect peers
- AFM-Téléthon: French neuromuscular disease nonprofit combining family services, large-scale research funding, and the annual Téléthon fundraising event. Comparable in scope (research + family support) but operating primarily in France.
- Parent Project Muscular Dystrophy (PPMD): The US parent-led nonprofit for Duchenne and Becker muscular dystrophy. Closest direct comparable to DPPE — same mission, same parent-led model, similar patient registry and research funding programs.
- Duchenne UK: UK-based Duchenne-focused charity funding research and supporting families. Directly comparable mission and activities, including research investment and family support, but operating in the UK market.
- World Duchenne Organization: International umbrella organization coordinating national Duchenne patient groups. DPPE is a member; WDO focuses on global advocacy, awareness, and cross-border knowledge sharing rather than direct family services.
- CureDuchenne: US-based Duchenne-focused nonprofit funding research and accelerating drug development. Comparable research-funding orientation with a stronger biotech venture philanthropy tilt.
- Parent Project APS (Italy): Italian Duchenne and Becker muscular dystrophy parent association. Closely analogous parent-led model, registry work, and research funding approach in another European market.
Emerging players
- TREAT-NMD Alliance: Global network for neuromuscular disease research and care infrastructure. DPPE is a member; comparable in research/registry mission but operates as a coordinating network rather than a direct patient-services provider.
Regional players
- Deutsche Duchenne Stiftung: German Duchenne foundation funding research and supporting families. Same mission in another European market; primarily serves German-speaking patients and donors.
Broad incumbents
- Muscular Dystrophy Association (MDA): Large US-based nonprofit covering multiple neuromuscular diseases. Comparable research funding and patient advocacy mission, but broader disease scope and substantially larger budget.
- EURORDIS: European Organisation for Rare Diseases — alliance of rare-disease patient organizations across Europe. DPPE is a member; comparable in advocacy orientation but broader rare-disease scope rather than Duchenne-specific.
Market position
Strengths4 records
Weaknesses4 records
Competitive moat4 records
Key risks5 records
Key highlights6 records
Customer concentration
Duchenne Parent Project España social profiles
Digital presenceDuchenne Parent Project España financial estimates
Financial estimateRevenue estimate
Valuation estimate
Duchenne Parent Project España leadership team
Management profileNumber of profiles
Duchenne Parent Project España funding detail
Funding detailFunding overview
Funding rounds
Investors
Funding detail is available on the Subscription and Enterprise plan.Contact sales →
Duchenne Parent Project España 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 Duchenne Parent Project España
What does Duchenne Parent Project España do?
Duchenne Parent Project España is a patient advocacy organization serving families affected by Duchenne and Becker muscular dystrophy in Spain. It provides community support, advocacy, and resources for the neuromuscular disease community. Specific product/service details are not evidenced in the provided input.
Is Duchenne Parent Project España a public or private company?
Duchenne Parent Project España is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was Duchenne Parent Project España founded?
Duchenne Parent Project España was founded in 2013. It employs 11 to 50 people.
Where is Duchenne Parent Project España based?
Duchenne Parent Project España is headquartered in Madrid, Spain, in the Europe region.
How does Duchenne Parent Project España make money?
Four revenue lines are on record. Donations and Fundraising is the primary driver. The others are solidarity Store, corporate Partnerships and events.
Who are Duchenne Parent Project España's main competitors?
Direct peers on record are AFM-Téléthon, Parent Project Muscular Dystrophy (PPMD), Duchenne UK, World Duchenne Organization, CureDuchenne and Parent Project APS (Italy). TREAT-NMD Alliance is listed as an emerging player. Deutsche Duchenne Stiftung is listed as a regional player. Broad incumbents are Muscular Dystrophy Association (MDA) and EURORDIS.
Does Duchenne Parent Project España have an API?
No public API is recorded for Duchenne Parent Project España.
What industry is Duchenne Parent Project España in?
Duchenne Parent Project España's product category is Patient Advocacy and Rare Disease Support. Its primary akta.pro industry code is BPAGACAA, Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS). Its NAICS code is 62419 and its SIC code is 8600.