Batten Disease Family Association

What Batten Disease Family Association does

The Batten Disease Family Association (BDFA) is a UK-registered Charitable Incorporated Organisation (charity number 1205650), founded in 1998 by parents of children affected by Batten disease (Neuronal Ceroid Lipofuscinosis, or NCL) — an ultra-rare, fatal neurodegenerative genetic disorder with global incidence of approximately 1 in 100,000 live births across 13 known subtypes (CLN1–CLN14, excluding CLN9). It is the only registered charity providing professional support to individuals and families affected by Batten Disease in the UK, serving an estimated 110–150 affected families.

The BDFA delivers a portfolio of human-led support services rather than a unified technology product. Core offerings include the Family Wellbeing Service (commissioned via The Maypole Project, deploying 14 specialist counsellors), the Peer Befriending Service (launched July 2022, with 11 trained parent volunteers across three training cohorts providing 1:1 support via Zoom and telephone), and the BDFA Family Folder — a comprehensive CLN-type-specific information resource provided free to families and at £25 to professionals. Complementary services encompass bereavement support, Bertie's Helpers (a food-delivery initiative providing Tesco ready-meals to families in crisis), education and benefits guidance, family events and virtual meet-ups, and advocacy in research and treatment access. Operations are coordinated with seven NHS England commissioned specialist treatment centres for children and five adult specialist centres.

The organisation is funded entirely through voluntary donations, fundraising activities, trust and foundation grants, legacy gifts, and merchandise sales (e.g., adult hoodies at £25, Buddy the Bear at £14.95) — it receives no government funding and does not publicly disclose its revenue. In 2024, the BDFA completed its transition to CIO status for legal protection and sustainability, and appointed Liz Brownnutt as CEO. The small team of approximately seven paid staff operates from a registered office in Shipley, West Yorkshire (BD18 9GE). Active partnerships span the Batten Disease Global Research Initiative (BDGRI), ForeBatten Foundation (Project Four Leaf Clover ASO programme), and various biotech groups developing therapies for Batten disease subtypes, including Tern Therapeutics, Latus Bio, and THX Pharma.

Name

Batten Disease Family Association

Legal name

Batten Disease Family Association CIO

Website

https://bdfa-uk.org.uk

Company type

Private

Founded year

1998

Operating status

Operating

Headcount range

1–10 employees

Short description

The Batten Disease Family Association (BDFA) is the only UK-registered charity providing professional support to families affected by Batten disease, an ultra-rare fatal neurodegenerative genetic disorder affecting an estimated 110–150 UK families across 13 subtypes.

Ownership category

akta.pro rank

Product category

Rare Disease Patient Advocacy and Family Support Services

NAICS

Other Individual and Family Services (624190), Individual and Family Services (6241), Voluntary Health Organizations (813212)

SIC

Services-Social Services (8300), Services-Health Services (8000)

akta.pro primary industry

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

Keywords

• Rare disease support
• Family support services
• Charitable fundraising
• Bereavement counselling
• Patient advocacy services

Headquarters

HQ city

London

HQ country

United Kingdom

HQ region

Europe

Offices1 record

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: The BDFA receives NO funding from Government and is entirely dependent on voluntary donations, fundraising activities, and charitable trust funding to carry out its work.
2. Merchandise Sales: Online shop selling awareness merchandise including hoodies, t-shirts, awareness ribbons, cards, bears, and other items to raise funds and awareness.
3. Trust and Foundation Grants: Funding from charitable trusts and foundations including the National Lottery Awards for All Northern Ireland, Bank ABC donation programme, and various trust logos displayed.
4. Legacy Gifts: Charitable bequests and gifts in wills from supporters who wish to leave lasting donations to support families affected by Batten disease.

Pricing tiers

Go-to-market motion1 record

Distribution channels3 records

Marketing channels6 records

Core offering

The BDFA is a UK registered charity providing holistic support services to individuals and families affected by Batten disease (NCL), including CLN-type-specific family folders, counselling via the Family Wellbeing service, parent-to-parent peer befriending, bereavement support, family events, and an online awareness merchandise shop. It also funds and disseminates Batten disease research and treatment information, and advocates on access to therapies such as Brineura.

Product overview

The Batten Disease Family Association (BDFA) is a charitable organisation providing holistic support services to families affected by Batten disease in the UK. Rather than a unified software product, BDFA offers a portfolio of support services including the Family Wellbeing Service (counselling via The Maypole Project), Peer Befriending Service (parent-to-parent support), and the BDFA Family Folder (comprehensive disease information resource). Additional services include an online shop for awareness merchandise, donation and fundraising platforms, family events and workshops, bereavement support, and research/education resources. The organisation also provides practical assistance through initiatives like Bertie's Helpers (food deliveries).

Differentiator

Problem solved

Functional benefit

Brands

• Bertie's Helpers: A project established by Mimi and Andrew Petty in memory of their son Bertie who died of CLN1 Batten disease. Provides practical help to families by providing Tesco food delivery gifts so families can spend more precious time together.

Products and services

• Family Wellbeing Service Counselling service commissioned by BDFA and run by The Maypole Project, providing adult counselling, child and young person counselling, couple counselling, and one-to-one buddying support for family members affected by Batten disease.
• Peer Befriending Service Service launched in July 2022 where trained parent Peer Befrienders (parents of children with Batten disease) offer 1:1 support to other parents over Zoom or telephone, alongside regular virtual Mum's Chats and Dad's Chats groups.
• BDFA Family Folder Comprehensive folder containing disease-specific information about all aspects of care and support for each CLN type, provided free to families and available to professionals for £25.
• BDFA Online Shop Online shop selling awareness merchandise including adult hoodies (£25), adult t-shirts (£18), awareness ribbons, Christmas cards, Buddy the Bear (£14.95), books, running vests, wristbands and other awareness items to raise funds and awareness.
• Donation Services Online donation platform offering one-off donations, regular monthly giving, and pay-in fundraising options, with Gift Aid declaration capability for UK taxpayers.
• Legacy Giving (Gift in Wills) Legacy giving programme allowing supporters to leave gifts in wills (residuary, pecuniary, or specific legacies) to support families affected by Batten disease.
• Family Events and Workshops Regular virtual family meet-ups including Mum's Chats, Dad's Chats, and Family-Led Cooking Sessions, as well as in-person events and family days for the Batten disease community.
• Bertie's Helpers Practical support initiative providing Tesco food deliveries of ready-meals and treats for families facing challenging times such as new diagnosis, disease progression, hospital stays, or end-of-life situations.
• Bereavement Support Comprehensive bereavement support including anticipatory grief resources, referrals to Family Wellbeing Service, peer befriending, and connections to external support organisations including Winston's Wish, Grief Encounter, Child Bereavement UK, and A Child of Mine.
• Fundraising Campaigns Fundraising initiatives including challenge events (marathons, ultra challenges, cycling challenges), corporate partnerships, trust and foundation funding, and the annual International Batten Disease Awareness Day on 9th June.
• In Memory and Special Occasion Fundraising Fundraising services for giving in memory of loved ones or for special occasions including weddings, birthdays and funerals, with JustGiving page setup and collection options.

Quantifiable outcome

• 110-150 families estimated to be affected by Batten disease in the UK receiving support
• +2 more outcomes

Named customers1 record

Segments1 record

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

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

• The Maypole ProjectcoreStrategic or Co-development PartnerThe BDFA commissions The Maypole Project to run the Family Wellbeing service, which provides counselling services and sibling activities for family members. The Maypole Project specializes in supporting families of children with complex needs and life limiting conditions and has received additional training specifically around Batten disease impacts.
• NHS England Commissioned Specialist Treatment CentrescoreStrategic or Co-development Partner7 specialist NHS centres across the UK provide multi-disciplinary healthcare to children with NCL diseases, particularly for CLN2 patients undergoing Brineura treatment. The BDFA works with NHS England commissioners to broaden scope to all NCL types.
• Newborn Screening CollaborativeminorStrategic or Co-development PartnerBDFA is a member organization displayed on partner logos, working collaboratively on newborn screening initiatives.
• Disabled Childrens PartnershipminorStrategic or Co-development PartnerBDFA is listed as a partner organization in the Disabled Childrens Partnership.
• LSD (Lysosomal Storage Disorders) CollaborativecoreStrategic or Co-development PartnerBDFA is a member of the LSD Collaborative, working with NHS England commissioners on specialist treatment centre development.
• Together for Short LivescoreStrategic or Co-development PartnerCharity providing information and resources about palliative and end of life care for children. BDFA references their resources and tools for families.
• ForeBatten FoundationmajorStrategic or Co-development PartnerForeBatten Foundation is working on Project Four Leaf Clover, an Anti-Sense Oligonucleotide (ASO) project targeting the common CLN3 mutation. BDFA shares updates with families and provides point of contact for questions.
• Batten Disease Global Research Initiative (BDGRI)coreStrategic or Co-development PartnerInternational consortium of leading patient advocacy organizations united to accelerate research for all forms of Batten disease. BDFA participates in announcing annual research grant recipients.
• THX Pharma (formerly Theranexus)minorStrategic or Co-development PartnerBDFA shares news updates about THX Pharma's partnership with Biocodex for Batten disease research developments.
• Latus BiominorStrategic or Co-development PartnerUS biotechnology company developing LTS-101 treatment for Batten disease. BDFA shares updates with the community.
• Tern TherapeuticsminorStrategic or Co-development PartnerBDFA shares updates about Tern Therapeutics clinical trial of TTX-381 gene therapy for ocular CLN2 Batten disease and long-term safety/efficacy data presentations.
• Winston's WishminorStrategic or Co-development PartnerCharity helping families, children and young people who have lost a family member. BDFA shares their resources as part of bereavement support.
• Grief EncounterminorStrategic or Co-development PartnerProvides bereavement support for children in the UK. BDFA recommends their resources for bereaved families.
• Child Bereavement UKminorStrategic or Co-development PartnerSupports families when a child grieves or dies. BDFA shares their resources with bereaved families.
• A Child of MineminorStrategic or Co-development PartnerSupports bereaved parents and families with emotional support and practical information and guidance.
• BioXconomyminorStrategic or Co-development PartnerBDFA was approached by BioXconomy for an article about CLN3, contributing to research awareness.

Scale indicators4 records

Recent moves7 records

Expansion highlights6 records

Others

• Winston's Wish: UK charity supporting bereaved children and young people. BDFA shares Winston's Wish resources as part of its bereavement support offering — a complementary referral partner rather than a competitor, addressing adjacent bereavement need.

Broad incumbents

• Genetic Alliance UK: UK alliance of over 200 patient organizations supporting those affected by genetic conditions. Provides policy advocacy and umbrella support; BDFA's disease-specific work sits within this wider genetic-conditions umbrella.
• Together for Short Lives: UK charity providing information and resources about palliative and end-of-life care for children. BDFA references Together for Short Lives resources for families — a broader palliative-care incumbent serving a wider population.
• Alzheimer's Research UK: UK neurodegenerative disease research charity. Batten disease is a childhood-onset neurodegenerative condition, positioning this peer as a category-adjacent funder of related brain-disease research and family support.
• National Organization for Rare Disorders (NORD): US-based umbrella organization for rare disease patient advocacy groups. Functions as a sector-level peer with research grants, policy advocacy, and patient support programs at a much larger scale.
• Great Ormond Street Hospital Charity: Major UK pediatric hospital charity. BDFA staff (e.g., Health Play Specialist Mimi Petty) previously worked at GOSH, and many Batten disease children receive care there — a clinical-care-and-fundraising peer in the same pediatric ecosystem.

Emerging players

• Childhood Dementia Initiative: Australian-based charity advocating for children with dementia, including Batten disease. BDFA and Childhood Dementia Initiative share overlapping mission in childhood-onset neurodegeneration and could converge on joint advocacy initiatives.

Direct peers

• Batten Disease Global Research Initiative (BDGRI): International consortium of leading patient advocacy organizations including BDFA, accelerating research for all forms of Batten disease. Functions as a research-funding peer network with shared grant-making operations.
• Batten Disease Support and Research Association (BDSRA): The US-based equivalent of BDFA — a patient advocacy organization providing support, research funding, and family services for Batten disease. Operates the same disease-specific advocacy model in a larger US market.
• Beyond Batten Disease Foundation: US-based nonprofit focused on funding research and providing support for families affected by juvenile Batten disease (CLN3). Closely aligned mission with BDFA, operating in the same disease area with research-grantmaking and family support.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks7 records

Key highlights7 records

Customer concentration

• Xx.com/BattenDiseaseUK
• YouTubeyoutube.com/@bdfa-battendiseaseuk
• Facebookfacebook.com/bdfauk
• LinkedInlinkedin.com/company/batten-disease-family-association
• Instagraminstagram.com/bdfabattendisease

Revenue estimate

Valuation estimate

Number of profiles

Profiles7 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Batten Disease Family Association