Parent Project aps
Parent Project aps is an Italian nonprofit patient association founded in 1996 serving patients with Duchenne and Becker muscular dystrophy, their families, and caregivers across all 20 Italian regions through patient registries, digital platforms, home-based care, and European-coordinated research programs.
- Company typePrivate
- Founded1996
- HeadquartersRoma, Italy
- Headcount11–50
- GTM typeB2C
- OfferingServices
What Parent Project aps does
Parent Project aps is an Italian nonprofit patient association (associazione di promozione sociale) founded in 1996 and headquartered in Rome at Via Pietro de Francisci, 36. It serves patients with Duchenne and Becker muscular dystrophy (DMD/BMD), their families, female carriers, caregivers, and the healthcare professionals who treat them, operating across all 20 Italian regions with a staff of 47. The association's mission spans scientific research promotion and funding, direct family support through a national network of listening centers (Centri Ascolto) and territorial meetings, advocacy for drug access, and educational outreach.
The organization operates a portfolio of core products and platforms: the Registro Pazienti DMD/BMD Italia patient registry, the PaLaDIn (Patient Lifestyle and Disease Data Interactium) digital platform — a €21.4M European-coordinated initiative integrating clinical, lifestyle, and PROMs/PREMs data — the Sostegninrete.it platform matching personal assistants with people with disabilities, the Parent Project On The Road SUD home-based care program delivering cardiology and pneumology services to southern Italy, the printable Emergency Card, and an extensive educational materials library. Sub-brands such as Centro Ascolto Duchenne (CAD) anchor community-facing services.
Parent Project's business model is entirely donation- and grant-funded; all services are provided free of charge to patients and families. Revenue streams include individual and corporate donations, 5xMille tax allocations, government grants from the Presidency of the Council of Ministers and the Ministry of Labour, European consortium funding (PaLaDIn, MAGIC), private foundation grants (Fondazione Johnson & Johnson, Fondazione Consulcesi, Forvia Foundation, Entrada Therapeutics DREAMS), and Otto per Mille funds from the Waldensian Church. The organization coordinates large multi-stakeholder European research projects (e.g., MAGIC with INSERM and UCL) while maintaining an extensive domestic service and advocacy footprint.
Parent Project aps firmographics
Firmographics- Name
- Parent Project aps
- Legal name
- Parent Project aps
- Website
- https://parentproject.it
- Company type
- Private
- Founded year
- 1996
- Operating status
- Operating
- Headcount range
- 11–50 employees
- Short description
- Parent Project aps is an Italian nonprofit patient association founded in 1996 serving patients with Duchenne and Becker muscular dystrophy, their families, and caregivers across all 20 Italian regions through patient registries, digital platforms, home-based care, and European-coordinated research programs.
- Ownership category
- akta.pro rank
Parent Project aps industry classification
Industry- Product category
- Patient Advocacy and Rare Disease Support
- NAICS
- Other Individual and Family Services (624190), Child and Youth Services (62411)
- SIC
- Services-Social Services (8300)
- akta.pro primary industry
- Family & Parenting Support Services (BPAGAEAC)
- akta.pro secondary industry
- Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)
Keywords
Where Parent Project aps is headquartered
LocationHeadquarters
- HQ city
- Roma
- HQ country
- Italy
- HQ region
- Europe
Offices1 record
Markets served
Parent Project aps 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 Fundraising: Parent Project aps relies on donations from individuals, corporate partnerships, and fundraising campaigns to fund its operations and research programs.
- Government and Institutional Grants: The organization receives funding from government bodies including the Ministry of Labor and Social Policies, the Presidency of the Council of Ministers (Minister for Disabilities), and regional governments for specific projects.
- Private Foundation Grants: Funding from private foundations such as Fondazione Johnson & Johnson, Fondazione Consulcesi, Forvia Foundation, and Entrada Therapeutics DREAMS grants.
- Church/Religious Organization Funding: Support from Otto per Mille (Eight per Thousand) funds of the Waldensian Church for specific projects in southern Italy.
Pricing tiers
| Model | Billing | Price |
|---|---|---|
| Other | Other | Free services for patients and families |
Go-to-market motion1 record
Distribution channels5 records
Marketing channels8 records
Parent Project aps product offering
Product offeringCore offering
Parent Project aps is an Italian nonprofit patient association that supports patients and families affected by Duchenne and Becker muscular dystrophy (DMD/BMD). It provides free services including family listening centers, the national patient registry, home-based healthcare delivery programs, educational materials, psychological support, and advocacy for drug access. The association also coordinates major European research projects and operates digital platforms for clinical data integration and personal assistant matching.
Product overview
Parent Project aps is a patient advocacy association offering a portfolio of support services, digital platforms, and programs for patients with Duchenne and Becker muscular dystrophy and their families. Core offerings include the Registro Pazienti DMD/BMD Italia (patient registry) and Emergency Card for clinical data management; PaLaDIn digital platform for integrated patient data; Sostegninrete.it for personal assistant matching; and Parent Project On The Road SUD for home-based healthcare delivery. Additional services include educational materials, teleconsultations, psychological support, and territorial meetings across Italy.
Differentiator
Problem solved
Functional benefit
Brands
- PaLaDIn (Patient Lifestyle and Disease Data Interactium): Digital platform project for collecting and integrating clinical data and patient-reported outcomes for people with neuromuscular and rare diseases.
- Parent Project On The Road
- MAGIC
- Registro Pazienti DMD/BMD Italia
- Centro Ascolto Duchenne (CAD)
- Dis Is Me
Products and services
- Registro Pazienti DMD/BMD Italia Italian Patient Registry for Duchenne and Becker muscular dystrophy - a database collecting demographic and clinical information on patients to support research, clinical trial recruitment, and natural history studies.
- PaLaDIn - Patient Lifestyle and Disease Data Interactium Digital platform integrating clinical data, lifestyle information, and Patient Reported Outcome Measures (PROMs) and Patient Reported Experience Measures (PREMs) for patients with neuromuscular and rare diseases. Total project budget €21.4 million.
- Sostegninrete.it Free digital platform connecting people with disabilities seeking personal assistants with qualified caregivers (OSS and ASA professionals), including profile matching, training resources, and educational materials.
- Parent Project On The Road SUD Home-based healthcare delivery program bringing respiratory monitoring, specialist consultations, and psychosocial support to DMD/BMD patients in southern Italy (Sicily, Calabria, Puglia, Basilicata), targeting 127 patients, 10 carriers, and 215 caregivers.
- Centro Ascolto Duchenne (CAD) - Listening Centers Network of listening centers providing psychological support, guidance, and orientation services for DMD/BMD families from diagnosis onwards, serving approximately 570 young adults with DMD/BMD over 16 years old and 160 Becker patients aged 13 and older.
- Annual International Conference on Duchenne and Becker Muscular Dystrophy Annual international conference bringing together patients, families, healthcare professionals, and researchers to share latest research findings, clinical guidelines, and community updates for DMD/BMD.
- Educational Materials Library Comprehensive collection of downloadable materials including clinical management guides, diagnostic resources, school integration guides, and fiscal assistance information for DMD/BMD families and healthcare professionals.
Quantifiable outcome
- Over 60 patients reached in Sicily through home monitoring program
- +3 more outcomes
Companies that use Parent Project aps
Customer profileNamed customers4 records
Segments5 records
Ideal customer profiles4 records
Parent Project aps technology and API
TechnologyTechnology focussed No
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
Feature4 records
Parent Project aps partnerships and signals
Strategic signalPartnerships
15 partnerships are on record, tiered core and minor.
- UILDM (Unione Italiana Lotta alla Distrofia Muscolare)coreNational partnership with UILDM for the Match Point project (€851,500 total budget) focused on training personal assistants and developing digital tools for autonomy of people with neuromuscular diseases. Also partner in the Dis Is Me project (€1,002,231.55 total budget) for disability rights and independent living.
- Sezioni UILDM (Bologna, Milano, Pisa)coreLocal UILDM sections as partners in the Match Point project, implementing training and support activities across Italian regions.
- ACE Medicina Solidale ETScorePartnership with ACE Medicina Solidale ETS in Reggio Calabria for providing free cardiology and pneumology specialist visits for DMD/BMD patients in Calabria. Partner in multiple projects including 'La centralità della salute cardiologica e pneumologica' and Parent Project On The Road SUD.
- Treat-NMDcoreScientific coordinator in the PaLaDIn project (€21.4 million total budget), providing expertise in neuromuscular disease registries and patient engagement.
- Kinoa Innovation Studio (Kimap)minorPartner in Parent Mobility Maps project for mapping and improving accessibility in Terni, developing the Kimap Marathon initiative.
- Associazione I PagliacciminorPartner in Parent Mobility Maps project for inclusive mobility and accessibility education.
- Fundación Isabel GemiominorInternational collaboration for 'The Value of Facing School' project on educational inclusion for students with neuromuscular diseases.
- Federação ASEMminorInternational collaboration for educational inclusion project across Spain, Portugal, and Italy.
- Universidade de ÉvoraminorAcademic partner providing research expertise for the 'Value of Facing School' educational inclusion project.
- Foundation for Rare DiseasesminorInternational foundation partner for the educational inclusion project.
- Federazione Italiana Malattie RareminorNational partner for the educational inclusion project.
- Uniamo Fimr APS ETScoreLead organization in the S.M.A.R.T. 2.0 project (€780,500 total) with Parent Project contributing €37,825 to strengthen the Centro Ascolto Duchenne and support services for rare disease patients.
- INSERMcoreCoordinator of the MAGIC project (€6.5 million total) for accelerating gene therapy development for muscular dystrophies. Parent Project contributes €25,000 for patient engagement and dissemination.
- UCL (University College London)coreScientific coordinator of the MAGIC project for next-generation models and genetic therapies for rare neuromuscular diseases.
- Muscular Dystrophy UKcoreUK patient organization partner in the MAGIC project representing the patient voice in gene therapy development.
Scale indicators11 records
Recent moves7 records
Expansion highlights6 records
Parent Project aps competitors and assessment
Company assessmentDirect peers
- AFM-Téléthon: France's leading neuromuscular disease patient organization and a major funder of gene therapy research. Operates a similar advocacy + research-funding + family-support model in France and is a peer for rare neuromuscular patient-association scale, even though the parent-project brand is not directly shared.
- Muscular Dystrophy UK: UK national patient organization for muscular dystrophy, formally partnered with Parent Project in the MAGIC gene-therapy consortium. Provides the UK patient voice in neuromuscular disease research and support — same disease focus, similar service portfolio.
- UILDM (Unione Italiana Lotta alla Distrofia Muscolare): Italian national muscular dystrophy association, co-partner with Parent Project on Match Point and Dis Is Me projects. Both organizations serve the same DMD/BMD patient community in Italy and historically split territorial activities.
- Federación ASEM: Spanish federation of neuromuscular disease associations, partnered with Parent Project on the 'Value of Facing School' inclusive-education project. Operates the equivalent patient-association network for DMD/BMD and other neuromuscular conditions across Spain.
- Parent Project Muscular Dystrophy (PPMD, US): The original US-based Duchenne parent organization; Italy's Parent Project aps shares the brand lineage and mission. PPMD operates the largest DMD patient registry and policy advocacy footprint in North America, comparable in scope to Parent Project's Italian activities.
Broad incumbents
- Fondazione Telethon: Italy's largest genetic and rare disease research foundation, funder/parent of TIGEM and many Italian neuromuscular research initiatives. A broader incumbent in the same Italian rare-disease research-funding space where Parent Project operates.
Emerging players
- TREAT-NMD: International neuromuscular disease network coordinating patient registries and trial-readiness tools; scientific coordinator in the PaLaDIn project with Parent Project. Functions as an enabling/standards body that overlaps with Parent Project's registry and clinical-trial-support activities.
- CMT Italia Onlus: Italian patient association for Charcot-Marie-Tooth disease; operates a similar support-network model for another inherited neuromuscular disease. Comparable at the level of single-disease Italian patient-association operations and funding patterns.
Regional players
- UNIAMO FIMR APS ETS: Italian federation of rare disease patient organizations and lead partner in the S.M.A.R.T. 2.0 project with Parent Project. Comparable as a national umbrella/advocacy player for rare disease families in Italy, broader in disease scope but similar operating logic.
- Duchenne Parent Project Netherlands: The Dutch counterpart carrying the Parent Project brand in the Netherlands. Operates a similar support + research + advocacy model for DMD in the Dutch market; comparable for cross-border benchmarking of services and policy wins.
Market position
Strengths5 records
Weaknesses5 records
Competitive moat5 records
Key risks6 records
Key highlights7 records
Customer concentration
Parent Project aps social profiles
Digital presenceParent Project aps financial estimates
Financial estimateRevenue estimate
Valuation estimate
Parent Project aps leadership team
Management profileNumber of profiles
Profiles5 records
Parent Project aps funding detail
Funding detailFunding overview
Funding rounds
Investors
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Parent Project aps 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 Parent Project aps
What does Parent Project aps do?
Parent Project aps is an Italian nonprofit patient association that supports patients and families affected by Duchenne and Becker muscular dystrophy (DMD/BMD). It provides free services including family listening centers, the national patient registry, home-based healthcare delivery programs, educational materials, psychological support, and advocacy for drug access. The association also coordinates major European research projects and operates digital platforms for clinical data integration and personal assistant matching.
Is Parent Project aps a public or private company?
Parent Project aps is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was Parent Project aps founded?
Parent Project aps was founded in 1996. It employs 11 to 50 people.
Where is Parent Project aps based?
Parent Project aps is headquartered in Roma, Italy, in the Europe region.
How does Parent Project aps make money?
Four revenue lines are on record. Donations and Fundraising is the primary driver. The others are government and Institutional Grants, private Foundation Grants and church/Religious Organization Funding.
Who are Parent Project aps's main competitors?
Direct peers on record are AFM-Téléthon, Muscular Dystrophy UK, UILDM (Unione Italiana Lotta alla Distrofia Muscolare), Federación ASEM and Parent Project Muscular Dystrophy (PPMD, US). Fondazione Telethon is listed as a broad incumbent. Emerging players are TREAT-NMD and CMT Italia Onlus. Regional players are UNIAMO FIMR APS ETS and Duchenne Parent Project Netherlands.
Does Parent Project aps have an API?
No public API is recorded for Parent Project aps.
What industry is Parent Project aps in?
Parent Project aps's product category is Patient Advocacy and Rare Disease Support. Its primary akta.pro industry code is BPAGAEAC, Family & Parenting Support Services, with a secondary code of BPAGACAA, Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS). Its NAICS code is 624190 and its SIC code is 8300.