What The Lily Foundation does

The Lily Foundation is a UK-registered charity (charity number 1122071, company limited by guarantee number 06400879) founded in 2007 by Liz Curtis after the death of her eight-month-old daughter Lily from mitochondrial disease. It is described as the UK's leading charity dedicated to fighting mitochondrial disease and the largest charitable funder of mitochondrial disease research in Europe, having raised over £11 million since inception and supported 1,500 families affected by the condition.

The charity operates a multi-pillar model spanning patient support, research funding, and policy advocacy. Patient support services include Family, Young Adult, and Adult Support Weekends, a free Mental Health and Counselling Service operated in partnership with Rareminds and led by a clinical neuropsychologist, the Lily Wish Fund, virtual coffee mornings, patient information days, Zoom Room webinars, and benefits advice. The research pillar has funded 23 projects totalling over £2.8 million, including co-funded gene-editing work at the University of Cambridge with MRC UK and The Champ Foundation, and a partnership with MITO2i at the University of Toronto. The advocacy pillar was instrumental in the 2015 legalisation of mitochondrial donation in the UK, and the charity holds representation on the ILAP Patient and Public Reference Group alongside MHRA, NICE, SMC, and NHS England.

Revenue is generated entirely through donations, charitable grants, event fundraising, and merchandise sales, with no commercial pricing model. Fundraising channels span JustGiving peer-to-peer pages, more than 40 named family fundraising teams, recurring events (Lily Ball, Fight Night, Comedy Night, Golf Day, Butterfly Run, marathon teams), corporate partnerships, payroll giving, and earned media through the ITV Coronation Street storyline partnership and celebrity patrons including Josh Widdicombe and Jane Danson. The charity operates from a single headquarters in Warlingham, Surrey, and is governed by a board of trustees; founder Liz Curtis serves as CEO and was awarded an MBE in 2021 for services to people with mitochondrial disease.

Name

The Lily Foundation

Legal name

The Lily Foundation

Website

https://thelilyfoundation.org.uk

Company type

Private

Founded year

2007

Operating status

Operating

Headcount range

1–10 employees

Short description

The Lily Foundation is a UK-registered charity founded in 2007 that supports patients and families affected by mitochondrial disease through direct services, counselling, and community programmes, while funding scientific research and advocating for regulatory reform including the UK's 2015 mitochondrial donation legislation.

Ownership category

akta.pro rank

Product category

Rare Disease Charity / Mitochondrial Disease Patient Support

NAICS

Grantmaking Foundations (813211), Voluntary Health Organizations (813212)

SIC

Services-Social Services (8300), Services-Commercial Physical & Biological Research (8731)

akta.pro primary industry

Community Foundations (BPAGAKAB)

Keywords

• Mitochondrial disease charity
• Patient support services
• Medical research funding
• Rare disease advocacy
• Family counselling

Headquarters

HQ city

Warlingham

HQ country

United Kingdom

HQ region

Europe

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Marketing or Sales, Operations, Others

Distribution channels4 records

Marketing channels10 records

Core offering

The Lily Foundation is a UK charity that provides direct support services to individuals and families affected by mitochondrial disease, including counselling, support weekends, benefits advice, and a Lily Wish Fund. It funds biomedical research into mitochondrial disease through research grants and partners with academic and clinical institutions. It also runs public awareness, advocacy, and community fundraising programs to sustain its mission.

Product overview

The Lily Foundation is a UK-based mitochondrial disease charity offering a comprehensive ecosystem of patient support services, research funding, and awareness programs. The core offering consists of support services including Family, Young Adult, and Adult Support Weekends, a Mental Health and Counselling Service (in partnership with Rareminds), the Lily Wish Fund, Virtual Coffee Mornings, Patient Information Days, Zoom Room Webinars, and Benefits Advice. The charity funds research through Lily-Funded Research Projects and participates in regulatory pathways like ILAP. Fundraising programs include events (Golf Day, Fight Night, Comedy Night, Ball), corporate partnerships, and volunteering opportunities. Educational resources include The Lily Foundation Guide to Mitochondrial Disease, mitochondrial donation information, and a Resource Hub. The organization is the largest charitable funder of mitochondrial research in Europe.

Differentiator

Problem solved

Functional benefit

Products and services

• Family Support Weekend

Quantifiable outcome

• Supported 1,500 families affected by mitochondrial disease since 2007
• +6 more outcomes

Segments2 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Integration3 records

Partnerships

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

• RaremindscoreStrategic or Co-development Partner · 1 January 2021The Lily Foundation provides a free counselling service for patients affected by mitochondrial disease in conjunction with Rareminds, a specialist mental health organisation. The service offers one-to-one counselling with a clinical neuropsychologist and support for adults and young people.
• MITO2i (University of Toronto)coreStrategic or Co-development Partner · 1 January 2020MITO2i is a research initiative at the University of Toronto focused on advancing mitochondrial medicine. The Lily Foundation co-funded a study into the link between mitochondrial disease and neuropsychiatric diseases, and has collaborated on several projects. The partnership supports the charity's goal of positioning mitochondrial health as part of everyday healthcare.
• Newcastle University / Newcastle-upon-Tyne NHS Foundation TrustcoreStrategic or Co-development Partner · 4 March 2015The Lily Foundation played a pivotal role in campaigning for and supporting the legalisation of mitochondrial donation in the UK. Newcastle University, led by Prof Sir Doug Turnbull and Prof Mary Herbert, pioneered the technique. Newcastle NHS Trust became the first authorised site worldwide to undertake mitochondrial donation treatment. The charity continues to work closely with the university on research projects and the LifeArc Centre for Rare Mitochondrial Diseases.
• GENOMITcoreStrategic or Co-development PartnerGENOMIT is a global network of national centres working with patient organisations to improve diagnosis and care of mitochondrial disease patients. The Lily Foundation participates in Work Package 2, coordinating a global patient-reported registry. The network focuses on natural history, clinical outcomes, improving diagnosis rates, and identifying new disease-causing genes.
• International Mito Patients (IMP)coreStrategic or Co-development PartnerIMP is a global network of patient organisations including The Lily Foundation (UK), Mitocon (Italy), DGM (Germany), and AMMi (France). The network collectively coordinates patient registries and advocates for the mitochondrial disease community internationally.
• Wellcome Centre for Mitochondrial Research (WCMR)coreStrategic or Co-development PartnerThe Wellcome Centre for Mitochondrial Research at Newcastle University is a leading research institution in mitochondrial medicine. The Lily Foundation works closely with WCMR, and its founder Liz Curtis is connected to the centre's work. Prof Gráinne Gorman serves as Director of WCMR and sits on The Lily Foundation Medical Board.
• LifeArc Centre for Rare Mitochondrial DiseasescoreStrategic or Co-development PartnerThe LifeArc Centre for Rare Mitochondrial Diseases is transforming mitochondrial disease research, diagnosis, and treatment. The Lily Foundation is a key partner in this initiative, contributing to research strategy and patient engagement.
• Medicines and Healthcare products Regulatory Agency (MHRA)flagshipStrategic or Co-development PartnerThe Lily Foundation is a member of ILAP's Patient and Public Reference Group, set up by the MHRA in collaboration with NICE, SMC, and NHS England to streamline the approval process for rare disease medicines. The charity ensures patient needs are prioritised in regulatory decision-making.
• NHS EnglandcoreStrategic or Co-development PartnerPartner in the Innovative Licensing and Access Pathway (ILAP) alongside the MHRA, NICE, and SMC. NHS England is also the commissioner of mitochondrial disease care services with which The Lily Foundation collaborates on patient support delivery.
• Human Fertility and Embryology Authority (HFEA)coreStrategic or Co-development PartnerThe HFEA approved the first treatment trials for mitochondrial donation in 2016 and granted the first patient licence for mitochondrial donation in 2018. The Lily Foundation was instrumental in the campaign that led to the law change enabling these treatments.
• WillmottsminorGTM or Marketing PartnerSomerset-based transport company Willmotts provided two branded articulated lorries bearing The Lily Foundation logo to raise awareness about mitochondrial disease across UK roads. The lorries were on the road for several years as part of the company's fleet.
• RockinghorseminorGTM or Marketing PartnerRockinghorse is the charity arm of The Royal Alexandra Children's Hospital. The Pond family partnered with Rockinghorse for Aidan's Christmas Dinner Project, which raised over £24,000 providing Christmas hampers for families in hospital.
• Premia ReminorGTM or Marketing PartnerPremia Re is a reinsurance company that became a corporate supporter of The Lily Foundation after an employee nominated the charity. The company supports fundraising events, charity auctions, and raffles for the organisation.
• ITV / Coronation StreetflagshipGTM or Marketing PartnerThe Lily Foundation worked with ITV's Coronation Street to bring a mitochondrial disease storyline to the attention of millions of UK households. Liz Curtis reviewed scripts to ensure accuracy and advised actor Jane Danson, who subsequently became a charity patron. This collaboration significantly raised public awareness of mitochondrial disease.
• European Neuromuscular Centre (ENMC)coreStrategic or Co-development PartnerENMC coordinates international workshops on rare neuromuscular diseases. Lily Foundation staff participated in the Leigh Syndrome workshop alongside clinicians, researchers, industry, and patient advocates to advance research and care standards.
• Leigh Syndrome International ConsortiumStrategic or Co-development PartnerAn international consortium coordinated by The Lily Foundation to develop International Standards of Care for Leigh Syndrome, aiming to improve quality of life for patients worldwide.

Scale indicators14 records

Recent moves6 records

Expansion highlights6 records

Regional players

• AMMi (Association contre les Maladies Mitochondriales): AMMi is the primary French patient association for mitochondrial disease, providing family support and funding research in France. Regional peer because it operates with the same disease focus and patient-advocacy model as The Lily Foundation, but primarily serves the French market.
• Deutsche Gesellschaft für Muskelkranke (DGM): DGM is a German neuromuscular patient organisation that includes mitochondrial disease among its covered conditions. Regional peer because, while broader in scope, it serves a comparable patient community in Germany and is a co-member of International Mito Patients alongside The Lily Foundation.
• Mitocon - Insieme per lo Studio e la Cura delle Malattie Mitocondriali ONLUS: Mitocon is an Italian patient advocacy and research-funding group for mitochondrial disease. Regional peer sharing the same disease focus and family-support model but concentrated in Italy; listed alongside The Lily Foundation as a member of the International Mito Patients network.

Direct peers

• United Mitochondrial Disease Foundation: UMDF is the largest US-based patient advocacy and research-funding charity for mitochondrial disease, supporting patients and families, funding research grants, and running national awareness programs. Direct peer because both organisations share the same disease focus, family-support mission, and research-funding model, with Lily being the UK counterpart to UMDF.
• Mito Foundation: Mito Foundation is Australia's leading mitochondrial disease foundation, funding research, providing family support, and advocating for affected patients. Direct peer because it is the comparable national-level mito charity for the Australian market with a near-identical service mix of support weekends, research grants, and awareness campaigns.
• Climb (formerly Children Living with Inherited Metabolic Diseases): Climb is a UK-registered charity supporting children and families affected by inherited metabolic diseases, providing research funding, family support, and information services. Direct peer because it operates with the same UK rare-disease model of research grants, family liaison, and patient information that The Lily Foundation applies to mitochondrial disease.

Others

• International Mito Patients (IMP): IMP is a global network of national mitochondrial disease patient organisations, with The Lily Foundation as its UK member alongside Mitocon, DGM, and AMMi. OTHERS because it functions as a coordinating network for the peer charities rather than a direct service-delivery competitor.

Broad incumbents

• Wellcome Trust: Wellcome is a major UK-headquartered global charitable foundation funding biomedical research, including mitochondrial science through the Wellcome Centre for Mitochondrial Research at Newcastle University (a partner of The Lily Foundation). Broad incumbent because it shares the UK biomedical research-funding role but at vastly larger scale and across all of biomedicine.
• Genetic Alliance UK: Genetic Alliance UK is an umbrella body for over 200 rare-disease patient organisations, providing policy advocacy and infrastructure support. Broad incumbent because it operates a comparable UK rare-disease advocacy role but functions as a federation rather than a single-disease charity.
• Muscular Dystrophy UK: Muscular Dystrophy UK funds research and provides support across 60+ neuromuscular conditions, including some overlapping with mitochondrial disease. Broad incumbent because it operates a comparable UK charity/research-funding model but at significantly larger scale and across a broader disease portfolio.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks5 records

Key highlights7 records

Customer concentration

• Xx.com/4lilyfoundation
• YouTubeyoutube.com/channel/UCztuIvkNWcC-yZcOg5nsqQg
• Facebookfacebook.com/lilyfoundationuk
• Instagraminstagram.com/thelilyfoundation
• LinkedInlinkedin.com/company/the-lily-foundation-fighting-mitochondrial-disease

Compliance4 records

Revenue estimate

Valuation estimate

Number of profiles

Profiles9 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about The Lily Foundation