SMA Europe
- Company typePrivate
- Founded2004
- HeadquartersFreiburg, Germany
- Headcount11–50
- GTM typeB2B and B2C
- OfferingServices
SMA Europe firmographics
Firmographics- Name
- SMA Europe
- Legal name
- SMA Europe e. V.
- Website
- https://sma-europe.eu
- Company type
- Private
- Founded year
- 2004
- Operating status
- Operating
- Headcount range
- 11–50 employees
- Ownership category
- akta.pro rank
Where SMA Europe is headquartered
LocationHeadquarters
- HQ city
- Freiburg
- HQ country
- Germany
- HQ region
- Europe
Offices1 record
Markets served
SMA Europe business model
Business model- GTM type
- B2B and B2C
- Offering type
- Services
- Cost components
- Personnel, Others, Marketing or Sales, Operations, Technology or R&D
Revenue model
- Membership Fees: SMA Europe receives annual membership fees from its member patient organisations across Europe.
- Donations and Grants: Voluntary donations from member organisations and grants from other non-profit organisations support the organisation's activities.
- Corporate Funding: Funding from health sector corporates including pharmaceutical companies, with all partnerships established under a code of practice ensuring shared interest, transparency, trust, and mutual benefit.
- Event Fees: Registration fees collected from the International Clinical Care Symposium and other educational events.
Pricing tiers
| Model | Billing | Price |
|---|---|---|
| Freemium | Annual | Free membership for national SMA patient organisations |
| Subscription | Multi-year contract | Clinical Care Symposium registration fees |
Distribution channels5 records
Marketing channels9 records
SMA Europe product offering
Product offeringCore offering
SMA Europe is a non-profit umbrella organisation that coordinates 30 national SMA patient organisations across 28 European countries, delivering biennial research funding calls, evidence-based patient advocacy at European regulatory bodies, patient experience surveys (EUPESMA), clinical trial information, patient advocate training (SMAcademy), and the International Clinical Care Symposium. Its core outputs are research grants, advocacy representation, educational programs, and information platforms for the SMA community.
Product overview
SMA Europe is a non-profit umbrella organization that operates as a platform of interconnected services focused on research funding, patient advocacy, access to treatments, and community support for spinal muscular atrophy (SMA). The organization manages multiple programs including the Call for Research Proposals (funding €6+ million since 2008), OdySMA Access Hub (access to medicines advocacy), EUPESMA patient survey series, Clinical Trials Hub, SMA Daily Life Study (patient-relevant outcomes research), SMAcademy (patient advocate training), and the International Clinical Care Symposium. The portfolio spans research funding, patient experience data collection, treatment access advocacy, educational programs, and community convening. No unified software product or platform is offered; rather, the organization provides services, programs, and information resources.
Differentiator
Problem solved
Functional benefit
Brands
- OdySMA: A quest initiative by SMA Europe to highlight challenges in access to medicines and care, featuring an atlas that shows evidence-based gaps and challenges across Europe.
- SMAcademy
- EUPESMA
Products and services
- OdySMA Access Hub Community mobilisation initiative and evidence-based atlas highlighting challenges and gaps in access to SMA medicines and care across Europe, designed to ensure no one is left behind.
- EUPESMA Patient Experience Survey Series Pan-European survey series (EUPESMA-2025, 2023, 2021, 2019, and first survey) collecting longitudinal data on SMA patient experiences, expectations, treatment access, and clinical trial interest, published under ISSN 3134-6626.
- Clinical Trials Finder Searchable web-based platform providing the SMA community with information about SMA clinical trials available across Europe.
- SMA Daily Life Study Longitudinal research study following individuals living with SMA over time to understand how SMA impacts daily living across areas such as fatigue, pain, and mental health, in partnership with Tilburg University.
- SMA Patient Advocate Training (SMAcademy) Five-module self-paced e-learning programme equipping SMA patient advocates with knowledge and skills, culminating in an SMA Patient Advocate Training Certificate issued by SMA Europe.
- Call for Research Proposals Biennial funding programme supporting high-quality scientific projects aimed at advancing understanding of SMA and improving outcomes for people living with SMA; €6,091,034 funded since 2008 across 13 calls.
- International Clinical Care Symposium on SMA Biennial international symposium bringing together clinicians, researchers, and patient advocates to explore innovative solutions in SMA care; the 2nd edition will be held in Prague on 4-5 March 2027 with a focus on musculoskeletal care.
Quantifiable outcome
- 98% of survey respondents indicated there is a need for new clinical trials in SMA
- +1 more outcomes
Companies that use SMA Europe
Customer profileSegments3 records
Ideal customer profiles4 records
SMA Europe technology and API
TechnologyTechnology focussed No
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
SMA Europe partnerships and signals
Strategic signalPartnerships
Eleven partnerships are on record, tiered core and minor.
- Cure SMAcoreUS-based SMA patient organisation collaborating on transversal issues to improve the lives of people with SMA and their families.
- CureSMA IndiaminorIndian SMA patient organisation partner working on shared goals related to SMA awareness and advocacy.
- EUPATIcoreEuropean Patients' Academy on Therapeutic Innovation - collaboration on patient education and engagement in medicines research.
- EURO-NMDcoreEuropean Reference Network for Rare Neuromuscular Diseases - collaboration on neuromuscular disease standards and care.
- European Medicines AgencycoreEMA is represented at SMA Europe, with the organisation participating in EMA activities to elevate the patient voice in regulatory decisions.
- European Neuromuscular Centre (ENMC)coreInternational research organisation focused on neuromuscular diseases, collaborating on workshops and research initiatives.
- EURORDIScoreRare Diseases Europe - umbrella organisation for rare disease patient organisations across Europe, collaborating on policy and advocacy.
- SMA News TodayminorOnline news platform dedicated to SMA news and updates, collaborating on information dissemination.
- Rare Revolution MagazineminorDigital magazine covering rare disease stories and issues, collaborating on awareness and communication.
- Treat-NMDcoreInternational network for neuromuscular diseases providing patient registry and research coordination support.
- Tilburg UniversitycoreAcademic partnership for the SMA Daily Life Study, collaborating on research into patient-relevant outcomes such as fatigue, pain, and mental health.
Scale indicators6 records
Recent moves6 records
Expansion highlights5 records
SMA Europe competitors and assessment
Company assessmentDirect peers
- Treat-NMD: International neuromuscular disease research network, listed as a core SMA Europe partner for patient registry and research coordination. Highly comparable in patient-relevant research focus, although Treat-NMD emphasizes research infrastructure rather than direct advocacy.
- AFM-Téléthon: French neuromuscular disease patient organization and major co-funder of SMA Europe's 13th Call for Research Proposals. Operates a similar model combining research funding, patient advocacy, and disease-specific programs in the neuromuscular space.
- EURORDIS – Rare Diseases Europe: Pan-European umbrella of rare disease patient organizations, listed by SMA Europe as a core partner. Highly comparable in structure and operating model, though EURORDIS spans all rare diseases rather than focusing on SMA alone.
- CureSMA India: Indian SMA patient organization listed as a partner of SMA Europe, focused on SMA awareness and advocacy in India. Directly comparable disease focus but operating in a different geographic market.
- Cure SMA: Leading US-based SMA patient organization that funds research and runs the Annual SMA Conference. Named as a core strategic partner of SMA Europe for collaboration on transversal SMA issues — directly comparable mission and program mix.
- Parent Project Muscular Dystrophy (PPMD): US-based patient organization for Duchenne muscular dystrophy with a similar portfolio of research funding, advocacy, and clinical education programs. Closely mirrors SMA Europe's structure and program mix in a neighboring neuromuscular disease.
- EURO-NMD – European Reference Network for Rare Neuromuscular Diseases: European Reference Network collaborating with SMA Europe on neuromuscular disease standards and care. Comparable in focus on neuromuscular disease coordination, though EURO-NMD is a clinical reference network rather than a patient membership body.
Broad incumbents
- European Patients' Forum (EPF): Pan-European umbrella of patient organizations across all disease areas. Operates with a similar member-organization model and policy advocacy mandate but at a wider thematic scope than SMA Europe.
- NORD – National Organization for Rare Disorders: US-based umbrella for rare disease patient organizations with structural and operational similarities to SMA Europe, but operating across the full rare disease spectrum and on a larger scale.
- Muscular Dystrophy Association (MDA): Large US neuromuscular disease advocacy and research funder with overlapping SMA-relevant programs but a much broader disease mandate and substantially larger budget. Comparable in mission, much larger in scale and scope.
Market position
Strengths4 records
Weaknesses4 records
Competitive moat5 records
Key risks6 records
Key highlights7 records
Customer concentration
SMA Europe social profiles
Digital presenceSMA Europe financial estimates
Financial estimateRevenue estimate
Valuation estimate
SMA Europe leadership team
Management profileNumber of profiles
Profiles17 records
SMA Europe funding detail
Funding detailFunding overview
Funding rounds
Investors
Funding detail is available on the Subscription and Enterprise plan.Contact sales →
SMA Europe 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 SMA Europe
What does SMA Europe do?
SMA Europe is a non-profit umbrella organisation that coordinates 30 national SMA patient organisations across 28 European countries, delivering biennial research funding calls, evidence-based patient advocacy at European regulatory bodies, patient experience surveys (EUPESMA), clinical trial information, patient advocate training (SMAcademy), and the International Clinical Care Symposium. Its core outputs are research grants, advocacy representation, educational programs, and information platforms for the SMA community.
Is SMA Europe a public or private company?
SMA Europe is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was SMA Europe founded?
SMA Europe was founded in 2004. It employs 11 to 50 people.
Where is SMA Europe based?
SMA Europe is headquartered in Freiburg, Germany, in the Europe region.
How does SMA Europe make money?
Four revenue lines are on record. Membership Fees are the primary driver. The others are donations and Grants, corporate Funding and event Fees.
Who are SMA Europe's main competitors?
Direct peers on record are Treat-NMD, AFM-Téléthon, EURORDIS – Rare Diseases Europe, CureSMA India, Cure SMA, Parent Project Muscular Dystrophy (PPMD) and EURO-NMD – European Reference Network for Rare Neuromuscular Diseases. Broad incumbents are European Patients' Forum (EPF), NORD – National Organization for Rare Disorders and Muscular Dystrophy Association (MDA).
Does SMA Europe have an API?
No public API is recorded for SMA Europe.