Spina Bifida Hydrocephalus Ireland

What Spina Bifida Hydrocephalus Ireland does

Spina Bifida Hydrocephalus Ireland (SBHI) is a national Irish charitable organization, founded in 1968 and registered as a Company Limited by Guarantee (Reg. Charity No. 20009366), serving individuals and families affected by Spina Bifida and/or Hydrocephalus in Ireland. Operating from a National Resource Centre in Clonshaugh, Dublin, with additional presence in Castleknock, SBHI delivers a portfolio of support services including Family Liaison support, the Learning Hub (an online learning management system with segmented courses for members, families, volunteers, schools, and external organizations), the Open Opportunity Service (a day programme for adults), Respite and Recreation services, a free Counselling Service (launched 2023), and the What Works For Me education and employment programme (funded by Pobal Dormant Accounts Fund). The organization holds policy influence through its seat on the Paediatric Spinal Taskforce and direct advocacy relationships with the Taoiseach and key ministers, alongside a distinctive GP Screening Card distributed to adult members.

SBHI's go-to-market motion is community-led, reaching members through a network of Family Liaison Officers deployed nationally, four annual coffee mornings across multiple counties (Claremorris, Athlone, Dublin, Carlow, Cavan, Cork City, Stillorgan), an annual Conference and AGM weekend, and awareness campaigns across Facebook, Twitter/X, LinkedIn, and Instagram. Revenue is generated through a diversified mix of donations (via JustGiving and iDonate platforms), annual membership fees for adult/child/supporter tiers, branded merchandise sales (€0.50-€33 price points), and grants from government bodies (Pobal, HSE) and corporate sponsors (AIB). Fundraising events including the Golf Classic, VHI Women's Mini Marathon, Sports Day, and Halloween Party drive both community engagement and contributed income, with the 2024 Golf Classic raising €8,150. The organization has a 2023-2027 Strategic Plan and is led by CEO Gerry Maguire (appointed 2021) under Chairperson Peter Landy.

Name

Spina Bifida Hydrocephalus Ireland

Legal name

The National Association for Spina Bifida and Hydrocephalus Ireland CLG

Website

https://sbhi.ie

Company type

Private

Founded year

1968

Operating status

Operating

Headcount range

11–50 employees

Short description

Spina Bifida Hydrocephalus Ireland is a national Irish charity, founded in 1968, providing family liaison, learning, employment, counselling, and advocacy services to individuals and families affected by Spina Bifida and/or Hydrocephalus across Ireland.

Ownership category

akta.pro rank

Product category

Disability Support Services

NAICS

Other Individual and Family Services (624190), Voluntary Health Organizations (813212), Services for the Elderly and Persons with Disabilities (624120)

SIC

Services-Social Services (8300), Services-Misc Health & Allied Services, Nec (8090)

akta.pro primary industry

Home & Community-Based Services (HCBS) Coordination & Case Management (HSABAIAM)

Keywords

• Disability support services
• Family liaison services
• Advocacy and campaigns
• Online learning hub
• Fundraising events

Headquarters

HQ city

Clondalkin

HQ country

Ireland

HQ region

Europe

Offices3 records

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Technology or R&D, Others

Revenue model

1. Donations and Fundraising: SBHI relies heavily on public donations and fundraising activities including the Annual Golf Classic, VHI Women's Mini Marathon, Sports Day, Halloween Party, and general donations through JustGiving and iDonate platforms. The 2024 Golf Classic successfully raised €8,150, and a donation of €1,500 was received from North West Vintage and Heritage Club.
2. Membership Fees: Annual membership fees for adult members, child members, and supporters, with various benefits including access to services, resources, annual reports, and local branch connections.
3. Merchandise Sales: Online shop selling branded merchandise including clothing (beanies, t-shirts, zip-up fleeces), drinkware (mugs, tumbler cups), bags, gifts, and miscellaneous items (pens, teddy bears, jigsaws, trolley tokens).
4. Grants and Sponsorship: Funding received from government bodies and corporate sponsors. The organization received Dormant Accounts Fund through Pobal for education and employment programmes, and sponsorship from AIB for the TU Dublin entrepreneurship course. Open Doors Initiative and Local Enterprise Office network provide programme support.

Pricing tiers

Go-to-market motion1 record

Distribution channels6 records

Marketing channels8 records

Core offering

SBHI is a registered Irish charity that delivers information, support, and advice services to individuals and families affected by Spina Bifida and/or Hydrocephalus across Ireland. Its core services include family liaison support, an online Learning Hub, the Open Opportunity day service, respite and recreation programmes, education and employment support (What Works For Me), advocacy and government lobbying, and a free counselling service. The organization also distributes the unique GP Screening Card health management tool and sells branded merchandise through an online shop.

Product overview

Spina Bifida Hydrocephalus Ireland (SBHI) is a charitable organization providing a portfolio of support services for individuals living with Spina Bifida and/or Hydrocephalus in Ireland. The organization operates as a unified service offering rather than a platform architecture. Core services include Family Liaison and Support Services, the Learning Hub (online educational courses), Open Opportunity Day Service, Respite and Recreation Services, the What Works For Me employment programme, and Advocacy and Campaigns. Additional services include the GP Screening Card, Dedicated Counselling Service, and a Monthly Newsletter. SBHI also operates a Shop selling branded merchandise and organizes annual fundraising events including Sports Day, Golf Classic, and Conference/AGM.

Differentiator

Problem solved

Functional benefit

Products and services

• Family Liaison Service Family support service providing essential information, support and advice to individuals and families living with Spina Bifida and/or Hydrocephalus across Ireland, delivered through Family Liaison Officers.
• Learning Hub Online learning management system offering courses for members, families, volunteers, and staff on education, employment, health, and disability-specific topics.
• Open Opportunity Service Day service programme at Castleknock providing social, recreational, and skill-building activities for adults with Spina Bifida and/or Hydrocephalus.
• Respite and Recreation Service Provides respite care and recreational programmes including family weekends, social events, and community activities for members of all ages.
• What Works For Me Programme Education and employment programme providing one-to-one support for members to secure and progress within meaningful employment, including Programme Coordinator, Skills Officer, and Peer Mentor roles.
• SBHI GP Screening Card Unique health management card distributed to adult members containing essential annual medical check lists to support independent health management with GPs.
• Dedicated Counselling Service Free counselling service for members providing psychological support via self or clinician referral, delivered by a qualified counsellor with disability sector experience.
• SBHI Shop Online shop selling branded merchandise including clothing, bags, drinkware, gifts, and miscellaneous items with proceeds supporting SBHI services.
• Events and Fundraising Programme Annual events including Sports Day, Golf Classic, Women's Mini Marathon, Conference/AGM, and seasonal social events for fundraising and community engagement.
• Advocacy and Campaigns Advocacy service lobbying government for improved health, education, and social services for people with Spina Bifida and/or Hydrocephalus.
• Membership Programme Adult and child membership registration for individuals with Spina Bifida and/or Hydrocephalus, providing access to services, support, and resources.

Quantifiable outcome

• €8,150 raised at 2024 Golf Classic
• +1 more outcomes

Named customers1 record

Segments5 records

Ideal customer profiles1 record

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature1 record

Partnerships

Nine partnerships are on record, tiered supporting and core.

• Open Future LearningsupportingTechnology or Integration · 1 January 2026Open Future Learning holds OFL Seal and Badge certifications displayed on the SBHI website, indicating partnership or integration for learning/education services.
• TU DublincoreStrategic or Co-development Partner · 18 June 2024TU Dublin launched a 2024 online entrepreneurship course for persons with disabilities, beginning September 18, running Wednesdays 11:00-13:00 for 12 weeks. The course is sponsored by AIB and supported by the Open Doors Initiative and Local Enterprise Office network. SBHI promotes this opportunity to its members as part of the What Works For Me employment programme support.
• Active Disability IrelandsupportingStrategic or Co-development Partner · 1 May 2024Active Disability Ireland presented at the 2024 SBHI AGM Conference, contributing to educational content for members on disability and active living.
• Open Doors InitiativesupportingStrategic or Co-development Partner · 1 January 2024The Open Doors Initiative supports the TU Dublin entrepreneurship course for persons with disabilities, working to improve employment opportunities for people with disabilities in Ireland.
• Count On Us RecruitmentsupportingChannel Partner/ Reseller/ Distributor · 1 January 2024Count On Us Recruitment presented at the 2024 SBHI AGM Conference, providing information about employment opportunities and recruitment services for people with disabilities.
• Cara Sport Inclusion IrelandsupportingStrategic or Co-development Partner · 3 December 2021Cara Sport Inclusion Ireland hosted the 'I'm In Too – My Choice To Be Active' online broadcast for International Day for People with Disabilities, in association with Sport Ireland and HSE, with SBHI CEO Gerry Maguire participating as a panelist.
• Sport IrelandsupportingStrategic or Co-development Partner · 3 December 2021Sport Ireland partnered with Cara Sport Inclusion Ireland and HSE for the 'I'm In Too' broadcast celebrating International Day for People with Disabilities.
• HSE (Health Service Executive)supportingStrategic or Co-development Partner · 3 December 2021HSE partnered with Cara Sport Inclusion Ireland and Sport Ireland for the 'I'm In Too' broadcast celebrating International Day for People with Disabilities.
• Irish Association of Prosthetists & Orthotists (IAPO)supportingStrategic or Co-development PartnerIAPO is a professional association working closely with many SBHI members. The organizations link their websites to enhance public awareness and information sharing between their communities.

Scale indicators5 records

Recent moves6 records

Expansion highlights5 records

Broad incumbents

• Hydrocephalus Association: US national non-profit dedicated to Hydrocephalus education, advocacy, and support. Overlaps with SBHI on condition-specific member services and policy advocacy but operates at larger US population scale with a research-funding focus.
• Spina Bifida Association: US national voluntary health agency for Spina Bifida, providing information, research funding, advocacy, and chapter network. Comparable to SBHI on member services and advocacy mission, but broader US geographic scope and deeper research-funding orientation.

Direct peers

• Rehab Group: Large Irish non-profit delivering disability services, education, training, and employment support. Comparable to SBHI on the What Works For Me employment programme dimension and on national advocacy for disability rights and inclusion in Ireland.
• Inclusion Ireland: Irish national disability rights and advocacy organization supporting people with intellectual disabilities and their families. Comparable to SBHI on advocacy-driven mission, policy influence, and family support services within the Irish disability ecosystem.
• Central Remedial Clinic: Irish not-for-profit providing therapy, education, and clinical services for children and adults with physical disabilities. Overlaps with SBHI on physical disability service delivery, family liaison, and advocacy, though heavier on clinical therapy versus condition-specific support.
• Disability Federation of Ireland: Irish national umbrella organisation representing disability NGOs and charities. Directly comparable as a peer in the Irish disability non-profit ecosystem, focused on advocacy, support, and collective policy voice for member organisations and the people they serve.
• Enable Ireland: Major Irish disability services provider delivering children's services, adult day services, clinical supports, and assistive technology. Operates a comparable multi-service non-profit model in the same Irish geography, with overlapping family support and advocacy functions.
• Children in Disability Ireland: Irish non-profit supporting children with disabilities and their families through information, advocacy, and family networking. Highly comparable to SBHI on the paediatric-to-family support axis, especially around transition services and education accommodations.
• Irish Wheelchair Association: Ireland's largest disability charity, providing personal assistance, assisted living, transport, and community engagement services. Comparable to SBHI as a large-scale Irish disability support charity with national service delivery and policy advocacy remit.
• Shine (UK): UK-based charity (formerly ASBAH) dedicated to Spina Bifida and Hydrocephalus, offering the closest functional analogue to SBHI: information, advocacy, family support, and member services for the same condition-specific population. Former SBHI CEO Tom Scott previously worked with Shine, evidencing organizational model parity.

Market position

Strengths4 records

Weaknesses5 records

Competitive moat4 records

Key risks6 records

Key highlights7 records

Customer concentration

• Xx.com/SBHIreland
• Facebookfacebook.com/SBHIreland
• LinkedInlinkedin.com/company/sbhireland
• Instagraminstagram.com/sbhireland

Compliance1 record

Revenue estimate

Valuation estimate

Number of profiles

Profiles7 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 Spina Bifida Hydrocephalus Ireland