International Federation for Spina Bifida and Hydrocephalus

What International Federation for Spina Bifida and Hydrocephalus does

The International Federation for Spina Bifida and Hydrocephalus (IFSBH or IF) is a non-profit international federation headquartered in Brussels, Belgium, founded in 1978 to serve people living with Spina Bifida and Hydrocephalus (SBH) worldwide. Its membership comprises over 100 nationally registered SBH associations across Africa, the Americas, Asia, Australia and Europe, and the federation operates through a small Secretariat of approximately 10 staff coordinated by a Board of Directors. Its mission spans primary prevention of neural tube defects (with strong emphasis on food fortification), the right to health, human rights under the UN Convention on the Rights of Persons with Disabilities (CRPD), awareness raising, community building, and international solidarity, including dedicated programs on ageing with SBH and a youth group.

IFSBH has no commercial technology product. Its core offerings are member services, advocacy campaigns, publications (annual reports since 2003, care guidelines, position papers, factsheets, advocacy toolkits), international conferences (the 31st edition scheduled for Montréal in October 2026), webinars, and regional meetings. The organization holds official relations with the World Health Organization, participates in UN mechanisms including the Conference of States Parties to the CRPD (notably COSP19 in 2026), and receives European Union co-funding for discrete programs. It is a member of the Smarter Futures food fortification partnership and partners with EURORDIS, the International Disability Alliance, and the Global Disability Summit.

Funding mechanics consist of membership fees from SBH associations, individual and institutional donations, event and conference registration, and project-based grants, primarily from the EU. Pricing is not publicly disclosed and is handled on a case-by-case basis. The go-to-market is community-led rather than commercial: IFSBH reaches its constituents through the federation membership layer, international conferences, webinars, youth groups, social media, and direct advocacy at UN and EU forums. Recent strategic outputs include the SBH Health Equity Project, a 2025 Annual Report, multiple COSP19 side events, and position papers positioning SBH as a health equity priority.

Name

International Federation for Spina Bifida and Hydrocephalus

Legal name

International Federation for Spina Bifida and Hydrocephalus

Website

https://ifglobal.org

Company type

Private

Founded year

1978

Operating status

Operating

Headcount range

1–10 employees

Short description

IFSBH is a Brussels-based non-profit international federation, founded in 1978, that supports over 100 national Spina Bifida and Hydrocephalus associations worldwide through prevention, advocacy, healthcare access, and human rights programs.

Ownership category

akta.pro rank

Product category

Disability Advocacy and Health Equity Federation

NAICS

Social Advocacy Organizations (8133), Business, Professional, Labor, Political, and Similar Organizations (8139)

SIC

Services-Membership Organizations (8600)

akta.pro primary industry

Multilateral Global Health Agencies (UN/IFIs) (HLAJAKAA)

Keywords

• Disability advocacy federation
• Spina bifida support
• Hydrocephalus awareness
• Neural tube prevention
• Nonprofit health association

Headquarters

HQ city

Brussels

HQ country

Belgium

HQ region

Europe

Offices1 record

Markets served

GTM type

B2B

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Others

Revenue model

1. Membership fees: IFSBH generates revenue through membership fees from SBH associations and organizations that share their vision and mission.
2. Donations: The organization accepts donations from individuals and organizations to support their work in prevention, advocacy, and community building.
3. Event registration: Revenue generated from international conferences and webinars including the annual International Conference on Spina Bifida and Hydrocephalus.

Go-to-market motion1 record

Distribution channels4 records

Marketing channels7 records

Core offering

IFSBH is a membership-based international federation that supports over 100 national Spina Bifida and Hydrocephalus (SBH) associations through advocacy, capacity building, knowledge exchange, and awareness campaigns. Its core deliverables include prevention programmes (notably food-fortification advocacy through the Smarter Futures partnership), the annual International Conference on Spina Bifida and Hydrocephalus, publications and clinical guidelines, World SBH Day (established 2011), and representation at WHO and UN CRPD forums. Membership in the federation is open to nationally registered SBH associations, organizations, institutions, companies, and individuals who share the federation's vision.

Product overview

The International Federation for Spina Bifida and Hydrocephalus (IFSBH) is a non-profit membership organization and advocacy federation, not a technology product company. Its offerings consist of member services, advocacy programs, publications, conferences, and educational resources. The organization does not offer software products or technology platforms. Its core activities include: advocacy for disability rights and healthcare equity; organizing international conferences (such as the 31st International Conference on Spina Bifida and Hydrocephalus); publishing policy documents, annual reports, and clinical guidelines; membership coordination across over 100 SBH associations globally; and awareness campaigns including World SBH Day.

Differentiator

Problem solved

Functional benefit

Products and services

• IFSBH Federation Membership Recurring membership that grants SBH associations and other eligible organisations access to capacity-building activities, advocacy training, knowledge-exchange events, regional meetings, and representation at WHO and UN forums.
• International Conference on Spina Bifida and Hydrocephalus Annual international conference bringing together the global SBH community for knowledge exchange, multidisciplinary care advances, and advocacy across the life course; open via registration.
• SBH Health Equity Project Member-engagement project that maps healthcare-access barriers for people with SBH and feeds into the federation's health-equity advocacy work.
• World Spina Bifida and Hydrocephalus Day (WSBHD) Annual global awareness campaign uniting member associations and partners around SBH prevention, care, and human-rights messaging.

Segments4 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Six partnerships are on record, tiered core, major and minor.

• World Health Organization (WHO)coreStrategic or Co-development PartnerIFSBH holds official relations status with WHO and participates in WHO Disability Health Equity Network. They contribute to WHO consultations on birth defects, assistive products, and disability-inclusive health.
• UN Convention on the Rights of Persons with Disabilities (CRPD)coreStrategic or Co-development PartnerIFSBH actively participates in the Conference of States Parties (COSP) to the CRPD, hosting side events and contributing to disability rights discussions on the 20th anniversary of the convention.
• Smarter Futures Partnership (Nouryon, HKI, FFI)majorStrategic or Co-development PartnerIFSBH is part of the Smarter Futures partnership focused on food fortification to prevent neural tube defects in Africa. The partnership has been renewed multiple times and celebrates 15+ years of impact.
• Global Disability SummitmajorStrategic or Co-development PartnerIFSBH participates in the Global Disability Summit, contributing to disability rights discussions and commitments alongside governments and civil society.
• EURORDISminorStrategic or Co-development PartnerIFSBH Secretary General has been re-elected to the EURORDIS Board of Directors, supporting collaboration on rare disease advocacy.
• International Disability Alliance (IDA)majorStrategic or Co-development PartnerIFSBH participates in IDA activities including General Assemblies and working groups on disability rights.

Scale indicators2 records

Recent moves6 records

Expansion highlights5 records

Direct peers

• EURORDIS - Rare Diseases Europe: European federation representing rare disease patient organizations, including those serving SBH populations. Directly comparable as a Brussels-based, member-driven, EU-funded federation advocating for equitable healthcare access for rare conditions, with overlapping CRPD and WHO engagement.
• World Federation of the Deaf: International federation of national associations of deaf people with UN consultative status. Comparable as a long-standing international federation of national disability organizations engaged in CRPD advocacy, capacity building, and conferences on a specific disability community.
• World Blind Union: Global organization representing blind and partially sighted people, with consultative status at the UN and CRPD engagement. Comparable as a federation-style disability advocacy organization working through CRPD mechanisms and regional capacity-building, similar to IFSBH's model.
• Food Fortification Initiative: Public-private partnership focused on promoting food fortification to prevent micronutrient deficiencies including neural tube defects. Direct collaboration partner through Smarter Futures, with closely aligned objectives on folic acid fortification and NTD prevention policy.
• World Federation of Neurology: International federation of national neurological societies addressing neurological disorders including hydrocephalus. Comparable as a global member-association federation focused on a related neurological condition, engaging WHO and hosting international congresses.
• March of Dimes: Long-standing US-based nonprofit focused on the health of mothers and babies, including prevention of birth defects such as neural tube defects. Highly comparable mission alignment on NTD prevention, folic acid advocacy, and maternal/child health policy.
• Rare Diseases International: Global alliance of rare disease patient organizations with UN ECOSOC consultative status. Directly comparable as a federation advocating for persons living with rare and often congenital conditions, focused on health equity, prevention, and human rights through multilateral channels.
• Cystic Fibrosis Worldwide: International federation supporting people with cystic fibrosis, a rare congenital condition. Comparable in structure as a membership-based international nonprofit with WHO/UN engagement focused on a specific rare condition, advocating for access to multidisciplinary care and rights.
• International Disability Alliance (IDA): Global alliance of disability and development organizations engaging with the UN and CRPD processes. Comparable as a federation-style organization working on disability-inclusive policy and rights, with which IFSBH already partners through IDA working groups and General Assemblies.

Broad incumbents

• International Pediatric Association: Global federation of national pediatric societies with WHO official relations. Comparable as a long-established federation with WHO engagement, addressing many of the same congenital and pediatric conditions relevant to SBH populations, though broader in scope.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks5 records

Key highlights6 records

Customer concentration

• Xbsky.app/profile/ifsbh.bsky.social
• YouTubeyoutube.com/user/IFglobalorg
• Facebookfacebook.com/ifsbh
• LinkedInlinkedin.com/company/international-federation-for-spina-bifida-and-hydrocephalus
• Instagraminstagram.com/ifsbh

Revenue estimate

Valuation estimate

Number of profiles

Profiles2 records

Funding overview

Funding rounds

Investors

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

M&A

Investments

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

Frequently asked questions about International Federation for Spina Bifida and Hydrocephalus