Stop Sanfilippo

What Stop Sanfilippo does

Stop Sanfilippo is a non-profit organization founded in 2012 and headquartered in Madrid, Spain, with the stated mission of promoting research against Sanfilippo Syndrome and providing care for children affected by the disease. Sanfilippo Syndrome (Mucopolysaccharidosis III) is a rare, progressive neurodegenerative lysosomal storage disorder for which there is currently no approved cure, making the organization's focus a high-need, low-incidence therapeutic area.

The organization operates as a patient-advocacy and research-funding foundation rather than a commercial entity. Its functional role encompasses fundraising to underwrite scientific research into Sanfilippo Syndrome, supporting affected families, and raising disease awareness. The website (stopsanfilippo.org) serves as the primary public-facing channel, though the source data did not yield detailed operational content beyond the organization's mission statement and leadership listing.

Stop Sanfilippo is led by President Emilio López Álvarez. The input data does not disclose headcount, revenue, donor base, research grants awarded, partner institutions, or financial statements. As a Spanish non-profit, its revenue model is presumed to rely on charitable donations, grants, and fundraising events, but no financial disclosures were available in the provided source material. There are no disclosed products, services, technology platforms, or commercial operations.

Name

Stop Sanfilippo

Website

https://stopsanfilippo.org

Company type

Private

Founded year

2012

Short description

Stop Sanfilippo is a Spanish non-profit organization founded in 2012 in Madrid, dedicated to promoting research against Sanfilippo Syndrome and supporting affected children and their families through advocacy, fundraising, and awareness activities.

Ownership category

akta.pro rank

Product category

Rare Disease Patient Advocacy

NAICS

Individual and Family Services (6241), Child and Youth Services (624110)

SIC

Services-Social Services (8300)

akta.pro primary industry

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)

Keywords

• Rare disease research
• Pediatric genetic disorders
• Nonprofit healthcare
• Patient care services
• Medical research funding

Headquarters

HQ city

Madrid

HQ country

Spain

HQ region

Europe

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Marketing or Sales, Operations, Others

Core offering

Stop Sanfilippo is a Madrid-based non-profit foundation founded in 2012 that promotes scientific research into Sanfilippo Syndrome (a rare pediatric neurodegenerative genetic disorder) and supports the care of children affected by the disease. The organization channels funds and awareness toward therapeutic research and provides direct support services for affected families.

Differentiator

Problem solved

Functional benefit

Products and services

• Sanfilippo Syndrome Research Promotion
• Care and Support for Affected Children

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Recent moves2 records

Broad incumbents

• National MPS Society: US-based umbrella organization supporting all MPS syndromes (including Sanfilippo/MPS III) and related lysosomal diseases. Operates as the incumbent broad-coverage charity in the same disease family as Stop Sanfilippo.
• Society for Mucopolysaccharide Diseases (MPS Society UK): UK charity supporting children and adults affected by MPS and related diseases, including Sanfilippo. Comparable European geographic footprint and patient-support orientation.

Regional players

• Federação Brasileira das Associações de Doenças Raras (FEBRARARAS): Brazilian federation of rare disease associations, including MPS/Sanfilippo family groups. Comparable rare-disease nonprofit operating model in a different Latin/European geography.
• Sanfilippo Children's Foundation: Australian nonprofit funding research and supporting families affected by Sanfilippo Syndrome. Comparable mission but primarily serves the Asia-Pacific region rather than Europe.

Direct peers

• Cure Sanfilippo Foundation: US-based nonprofit dedicated to funding research and advocacy for Sanfilippo Syndrome (MPS III). Directly comparable mission to Stop Sanfilippo and a primary competitor for global Sanfilippo research grants and donor dollars.
• Fundación MPS España: Spain-based national MPS patient association including Sanfilippo Syndrome. Most direct in-country peer, competing for Spanish Sanfilippo families and donors.
• Jonah's Just Begun: Family-founded nonprofit supporting Sanfilippo Syndrome (specifically MPS IIIB) research and awareness. Comparable narrow disease focus and family-led advocacy model.
• Team Sanfilippo: Foundation focused on raising funds and awareness for Sanfilippo Syndrome research and family support. Comparable single-disease mandate and family-driven operating model.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat2 records

Key risks4 records

Key highlights4 records

Customer concentration

• Xx.com/StopSanfilippo
• Facebookfacebook.com/StopSanfilippo
• LinkedInlinkedin.com/company/5073378

Revenue estimate

Valuation estimate

Number of profiles

Profiles1 record

Funding overview

Funding rounds

Investors

Funding detail is available on the Subscription and Enterprise plan.Contact sales →

M&A

Investments1 record

M&A and investment is available on the Subscription and Enterprise plan.Contact sales →

Frequently asked questions about Stop Sanfilippo