What Epilepsy ACT does

Epilepsy ACT (legally Epilepsy Association ACT Inc.) is a not-for-profit community service organization founded in 1982 and headquartered in Holder, Australian Capital Territory, with a staff of six. It provides support, information, education, advocacy, and referral services to approximately 4,500-8,000 people living with epilepsy in the ACT region, along with their families, carers, schools, and workplaces. The organization's core offerings include a national helpline (1300 852 853), personalized epilepsy management plans, psycho-social support, support groups, and seizure first aid resources.

The organization's product and service portfolio spans three main categories: (1) support services including helpline, management plans, and peer support; (2) education and training including TQI-accredited Understanding and Managing Epilepsy training ($744 for groups up to 15), Emergency Medication Training ($100 per person), the Epilepsy Smart Schools program, and a self-serve online training platform at epilepsysmartlearning.org.au; and (3) community engagement including the annual Walk for Epilepsy, Make March Purple campaign, Christmas in July event, and merchandise sales through an online shop and pharmacy distribution.

Epilepsy ACT operates on a donation-dependent revenue model with no current government funding. Revenue streams include individual donations, workplace giving (via Benevity), bequests, membership fees, fee-for-service training, merchandise sales ($5-$18 items), and event fundraising. The organization is a member of the national Epilepsy Australia coalition and partners with state-based epilepsy organizations. Distribution channels include direct service delivery from the Holder office, on-site training at client locations, online platforms, pop-up merchandise stalls at Westfield shopping centers, and pharmacy distribution through Capital Chemist, Blooms The Chemist, and Priceline Pharmacy.

Name

Epilepsy ACT

Legal name

Epilepsy Association ACT Inc.

Website

https://epilepsyact.org.au

Company type

Private

Founded year

1982

Operating status

Operating

Headcount range

1–10 employees

Short description

Epilepsy ACT is a not-for-profit community service organization founded in 1982 that provides support, training, advocacy, and education to people with epilepsy, families, schools, and workplaces in the Australian Capital Territory, funded entirely through donations, training fees, and community fundraising.

Ownership category

akta.pro rank

Product category

Epilepsy Support Services

NAICS

Individual and Family Services (6241), Educational Support Services (611710), Services for the Elderly and Persons with Disabilities (624120), Social Assistance (624), Other Individual and Family Services (624190)

SIC

Services-Social Services (8300), Services-Educational Services (8200)

akta.pro primary industry

Epilepsy & Seizure Disorders (HLAKAIAB)

akta.pro secondary industry

Disability Rights & Accessibility Advocacy (BPAGAFAF)

Keywords

• Epilepsy support services
• Seizure first aid training
• Community health advocacy
• Disability education programs
• Chronic illness support

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Donations and Fundraising: Individual donations, workplace giving programs, bequests in wills, and in-memory donations. Community is actively solicited through appeals and events.
2. Merchandise Sales: Sale of purple merchandise including plush toys, pens, keyrings, and other items through pop-up stalls and online shop.
3. Training Services: Fee-for-service training programs for organizations including workplace training ($744 for groups up to 15), emergency medication training ($100 per person), and community workshops.
4. Event Fundraising: Registration fees and fundraising through events like Walk for Epilepsy and Make March Purple campaigns.
5. Membership Fees: Annual membership with benefits including newsletters, educational programs, social events, and access to resources.

Pricing tiers

Go-to-market motion3 records

Distribution channels6 records

Marketing channels7 records

Core offering

Epilepsy ACT is a not-for-profit community service organization that provides free personalised support, information, advocacy, and psycho-social services to people with epilepsy and their families in the Australian Capital Territory. It also delivers fee-based education and training programs (workplace, school, and emergency medication training) and operates community awareness events and a merchandise/donation shop to fund its services.

Product overview

Epilepsy ACT is a not-for-profit community service organisation providing support, information, education, and advocacy for people with epilepsy in the ACT and surrounding regions. The organisation operates a suite of support services including a national helpline, personalised epilepsy management plans, and psycho-social supports. Its education division offers both in-person and online training programs (Understanding and Managing Epilepsy, Emergency Medication Training) through its Epilepsy Smart Schools Program. Community engagement includes annual awareness events such as Walk for Epilepsy and Make March Purple, plus the Christmas in July community celebration. Publications include children's books and Aboriginal resources. The organisation also operates a merchandise shop and gift package program for donations.

Differentiator

Problem solved

Functional benefit

Products and services

• Epilepsy Support Services Personalised, practical and flexible psycho-social support, advocacy, and referral services for people with epilepsy, their families, and carers in the ACT region. Free of charge.
• National Epilepsy Helpline Free telephone support line (1300 852 853) providing information, support, and referral to people with epilepsy and their families across Australia.
• Epilepsy Management Plans Individualized plans created by staff for people with epilepsy, documenting seizure types, triggers, medications, and step-by-step emergency response procedures for family, schools, and carers.
• Understanding and Managing Epilepsy Training In-person or online training course covering epilepsy facts, seizure types, first aid response, and emergency medication administration. TQI accredited for 2 hours. Priced at $100 per person for community workshops and $744 for school groups up to 15 participants.
• Online Training Courses Suite of industry-recognized online training modules available on all devices, including Introduction to Understanding and Managing Epilepsy, Understanding the Epilepsy Management Plan, and the Epilepsy Smart Schools Program.
• Epilepsy Smart Schools Program Structured program for ACT schools that supports students with epilepsy through management plans, staff training, classroom awareness education, and school-wide events.
• Emergency Medication Training Training in the administration of emergency seizure medications such as Midazolam, delivered by a registered nurse for organisations and individuals who support people prescribed this medication.
• Workplace Epilepsy Awareness Training Group training for workplaces and organisations covering epilepsy awareness, seizure first aid, and support for employees with epilepsy. Delivered on-site at client locations.
• Publications and Resources Free accessible epilepsy resources including children's books (Dinosaur Friends, Down Down Down, To Catch a Star), Aboriginal-specific resources, and seizure first aid fact sheets.
• Merchandise Shop Online shop selling purple merchandise including plush toys, keyrings, pens, and the children's book 'Marvellous Miles' by Sarah Watts, used to raise community awareness and funds.
• Gift Donation Packages Tax-deductible symbolic gift donations in the $5 to $250 range that fund specific services such as training, epilepsy management plans, mental health support calls, sibling resources, and school outreach.
• Walk for Epilepsy Annual national awareness and fundraising walking event, featuring bridge-to-bridge walks around Lake Burley Griffin and challenge options such as the 1 in 25 Challenge (100km in 25 days) and 1 in 25 Legends Challenge (1,000km in 25 days).
• Make March Purple Campaign Annual March awareness and fundraising campaign featuring the 'Muck Up for Epilepsy' theme, encouraging participants to hold purple-themed events to raise funds and visibility.
• Christmas in July Community Event Annual community celebration for individuals and families affected by epilepsy, featuring festive activities, crafts, and connection opportunities.
• Annual Membership Annual membership program providing members with newsletters, educational programs, social events, and access to Epilepsy ACT resources and community.

Quantifiable outcome

• Free epilepsy helpline available: 1300 852 853
• +2 more outcomes

Named customers5 records

Segments5 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Ten partnerships are on record, tiered core and minor.

• Epilepsy Australia LtdcoreStrategic or Co-development PartnerNational coalition of Australian Epilepsy Associations. Epilepsy ACT is a member, raising voices as one to advance the cause of all Australians living with epilepsy.
• Epilepsy Smart AustraliacoreStrategic or Co-development PartnerNational partnership working together to bring best knowledge and resources about management of epilepsy. Provides help for people with epilepsy, supporters, and broader community organizations.
• The Epilepsy Centre (SA & NT)minorOthersPart of the national network of epilepsy organizations in Australia.
• Epilepsy TasmaniaminorOthersPart of the national network of epilepsy organizations in Australia.
• Epilepsy Association of Western AustraliaminorOthersPart of the national network of epilepsy organizations in Australia.
• Epilepsy Foundation (VIC & NSW)minorOthersPart of the national network of epilepsy organizations in Australia.
• Epilepsy QueenslandminorOthersPart of the national network of epilepsy organizations in Australia.
• BenevityminorGTM or Marketing PartnerWorkplace giving platform administering contributions for over 100,000 charities. Enables employee workplace giving programs.
• Cheeky Neurons (YouTube channel)minorOthersYouTube channel with Nix and Nellie neurons helping children and families understand epilepsy in a fun and engaging way.
• LivewireminorOthersFree online community connecting teens living with illness or disability, and their siblings, within Australia and New Zealand.

Scale indicators8 records

Recent moves6 records

Expansion highlights5 records

Direct peers

• Epilepsy Queensland: State-based epilepsy charity providing support, training, and advocacy in Queensland; operates the same service model (helpline, training, community events) as Epilepsy ACT and is a direct national-network peer.
• Epilepsy Tasmania: Tasmanian state epilepsy organization offering similar support, training, and information services to people with epilepsy; fellow member of the Epilepsy Australia national coalition.
• The Epilepsy Centre (SA & NT): South Australian and NT epilepsy service organization with comparable mission, training portfolio, and advocacy work; listed as a national-network partner alongside Epilepsy ACT.
• Epilepsy Foundation (Victoria & NSW): Largest Australian state-based epilepsy organization; directly comparable as a not-for-profit delivering support, training, and advocacy across a larger geography. National partner in the Epilepsy Australia coalition alongside Epilepsy ACT.
• Epilepsy Association of Western Australia: WA-based epilepsy charity providing helpline, training, and community education; direct structural peer under the same Epilepsy Australia umbrella network.

Emerging players

• Epilepsy Smart Australia: National partnership platform co-developing educational content and resources; overlaps with Epilepsy ACT's training content and could become a national substitute for locally delivered programs.
• Epilepsy Australia Ltd: National federation/advocacy body of which Epilepsy ACT is a member; sets national strategy and policy direction and could evolve into a direct competing service provider rather than just a coalition partner.

Broad incumbents

• National Disability Services (NDS): Australian peak body for disability service providers; adjacent to Epilepsy ACT's disability training and advocacy work and serves overlapping workplace and organizational training customers at national scale.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks6 records

Key highlights6 records

Customer concentration

• Facebookfacebook.com/epilepsyACT
• LinkedInlinkedin.com/company/epilepsy-act

Compliance3 records

Revenue estimate

Valuation estimate

Number of profiles

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 Epilepsy ACT