What Endometriosis UK does

Endometriosis UK is a UK registered charity founded in 1981 and headquartered in London, dedicated to supporting people affected by endometriosis. It serves individuals living with the condition, their families, employers, and clinicians through a national helpline, more than 70 local support groups, an online community, and authoritative patient-facing publications available in 14 languages. The organization also runs the Endometriosis Friendly Employer scheme, which accredits workplaces that adopt supportive policies for employees with endometriosis, exemplified by accredited employers such as Southeastern Railway.

Its core products and services are operational rather than technological: peer-support group facilitation, a free telephone and digital helpline, multilingual information resources, policy advocacy outputs (including the State of Endometriosis Care Report 2026 and collaborative research with patient groups such as Cysters), and corporate accreditation and training via the employer scheme. The technology stack appears to consist of a website, online community platform, and standard survey tooling (SurveyMonkey), with no disclosed proprietary platform or advanced analytics layer.

The business model is a non-profit charity model funded through individual donations, membership subscriptions, community fundraising campaigns such as Walk for Endo, corporate partnerships (notably via the Employer scheme), and grants including partnerships with Welsh health bodies for the Wales Fertility Project. The organization employs approximately 53 staff and engages an extended volunteer network across support groups and advocacy campaigns.

Name

Endometriosis UK

Legal name

Endometriosis UK

Website

https://endometriosis-uk.org

Company type

Private

Founded year

1984

Operating status

Operating

Headcount range

51–100 employees

Short description

Endometriosis UK is a UK charity providing free support services, authoritative information in 14 languages, and policy advocacy for people affected by endometriosis, operating a national helpline, 70+ local support groups, and an employer accreditation scheme.

Ownership category

akta.pro rank

Product category

Patient Support Services

NAICS

Individual and Family Services (6241), Other Individual and Family Services (624190), Social Assistance (624)

SIC

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

akta.pro primary industry

Mental Health & Crisis Support Services (BPAGACAD)

Keywords

• Endometriosis support services
• Patient advocacy charity
• Women's health support
• Chronic illness helpline
• Peer support groups

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 organization relies on donations from supporters, fundraising events, and individual contributions to fund its operations and support services.
2. Membership: Community membership program allowing supporters to join and receive updates and engage with the organization's activities.
3. Corporate Partnerships: The Endometriosis Friendly Employer scheme allows employers to partner with the charity to support employees with endometriosis.

Go-to-market motion1 record

Distribution channels4 records

Marketing channels7 records

Core offering

Endometriosis UK is a registered charity that provides free support, information, and advocacy services to people affected by endometriosis in the UK. Its core offerings include a volunteer-staffed helpline, a nurse support helpline, a nationwide network of 70+ local support groups, an online community forum, free multilingual publications in 14 languages, an online symptom checker, and the Endometriosis Friendly Employer accreditation scheme, alongside policy and campaigns work targeting improved diagnosis and care standards.

Product overview

Endometriosis UK operates as a charity providing a comprehensive support ecosystem for individuals affected by endometriosis, comprising free information, support services, and advocacy programs. The core service offerings include a Helpline (0808 808 2227) staffed by trained volunteers with personal experience of endometriosis, Support Groups operating across the UK (England, Scotland, Wales, Northern Ireland) plus online groups, a Nurse Support Helpline, and an Online Community via Health Unlocked forum. The organization distributes free Publications and Information Packs covering topics such as Understanding Endometriosis, Pain Management, Treatment Options, Surgery, Fertility and Pregnancy, Diet and Complementary Therapies, and bladder/bowel endometriosis, available in 14 languages. Additional services include a Symptom Checker tool, educational Webinars featuring expert speakers, the Walk for Endo annual fundraising campaign, and the Endometriosis Friendly Employer Scheme providing workplace accreditation. The organization also publishes annual research reports including The State of Endometriosis Care Report, and co-produced the book 'Endometriosis: The Expert's Guide to Treat, Manage and Live Well with Your Symptoms' with Professor Andrew Horne.

Differentiator

Problem solved

Functional benefit

Products and services

• Helpline A free confidential telephone helpline (0808 808 2227) operated by trained volunteers who have personal experience of endometriosis, providing support, information, and a listening ear for those newly diagnosed or seeking guidance on treatment options.
• Support Groups More than 70 local in-person support groups across England, Scotland, Wales, and Northern Ireland plus online groups (including LGBTQ+ and Art Therapy groups), offering peer support and information to those affected by endometriosis.
• Publications and Information Packs Free downloadable factsheets, leaflets, and information packs covering topics including Understanding Endometriosis, Pain Management, Treatment Options, Surgery, Fertility and Pregnancy, Diet and Complementary Therapies, and bladder/bowel endometriosis, with guides available in 14 languages.
• Symptom Checker An online tool providing a quick and easy way for users to find out if their symptoms could indicate endometriosis, helping them understand their symptoms before seeking medical advice.
• Online Community / Health Unlocked Forum A moderated online forum hosted on Health Unlocked where members can discuss medical issues and connect with others affected by endometriosis, available to anyone who does not have access to a local support group.
• Nurse Support Helpline A helpline staffed by experienced nurses providing professional medical guidance and support for those affected by endometriosis.
• Endometriosis Friendly Employer Scheme A paid accreditation scheme for employers to demonstrate commitment to developing a work environment and culture that enables employees with endometriosis to thrive at work, providing recognition for supportive workplaces.

Quantifiable outcome

• 7.5 years average diagnostic delay in UK
• +1 more outcomes

Segments4 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Integration1 record

Partnerships

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

• Fertility Network UKcoreStrategic or Co-development Partner · 1 July 2026Endometriosis UK continues the Wales Fertility Project previously run by Fertility Network UK, demonstrating collaborative partnership to provide fertility support services to those with endometriosis in Wales.
• CysterscoreStrategic or Co-development PartnerPublished collaborative report 'Disbelieved, Dismissed, Delayed: Endometriosis Diagnosis Inequalities in Ethnically Diverse Communities' addressing healthcare disparities in endometriosis diagnosis for ethnically diverse communities.
• Soroptimists International Great Britain and IrelandmajorGTM or Marketing PartnerTwo-year partnership plan focusing on research into local availability of endometriosis information, diagnosis times, and treatment options. Partnership includes awareness raising in young girls and lobbying for improved healthcare.
• Southeastern RailwayminorGTM or Marketing PartnerSoutheastern Railway became an Endometriosis Friendly Employer in 2021, participating in Tea for Endo events and developing workplace support for colleagues with endometriosis.
• World Endometriosis Organisations (WEO)coreStrategic or Co-development PartnerMembership in global coalition of endometriosis organizations working together to improve awareness and care worldwide.

Scale indicators4 records

Recent moves6 records

Expansion highlights5 records

Direct peers

• Verity (PCOS UK): UK charity supporting people with polycystic ovary syndrome through peer support groups, information, and awareness. Closely comparable structure: small UK health charity running support groups, helplines, and volunteer-led services for a women's hormone condition.
• World Endometriosis Organisations: Global coalition of endometriosis patient and provider organizations, of which Endometriosis UK is a member. Comparable mission around endometriosis awareness and information provision, but operating as a coordinating federation rather than a direct service provider.
• Endometriosis Foundation of America: US-based non-profit focused on endometriosis awareness, research funding, and patient support. Directly comparable mission and operating model, though with stronger research-funding focus and a US rather than UK geographic base.
• Fertility Network UK: UK charity supporting those affected by fertility issues, including endometriosis-related infertility. Highly comparable operating model (helpline, support groups, advocacy) and a confirmed partner from which Endometriosis UK absorbed the Wales Fertility Project.
• Endometriosis Association: One of the oldest US-based endometriosis non-profits providing support, education, and research funding. Comparable disease-specific patient support mission, serving a similar end-user population with analogous helpline and information services.

Emerging players

• Cysters: UK grassroots organization focused on endometriosis and reproductive health in ethnically diverse communities. A confirmed partner of Endometriosis UK with overlapping mission but narrower community focus and earlier-stage scale.

Broad incumbents

• Mind (UK): Major UK mental health charity providing helplines, local support networks, and information resources. Highly comparable operating model (free helpline, support groups, web chat, publications) at significantly larger scale, representing a scaled-up analogue of Endometriosis UK's support infrastructure.
• Macmillan Cancer Support: Large UK health charity providing nurse-led helplines, information, and financial support to those affected by cancer. Operates a similar multi-channel support ecosystem at much larger scale, demonstrating the broader UK specialist health charity model Endometriosis UK is part of.
• British Heart Foundation: Large UK health charity combining research funding, patient information, and community support. Representative of a scaled UK disease-specific charity operating model and a useful benchmark for the upper bound of charity scale Endometriosis UK could plausibly reach.

Regional players

• Endometriosis New Zealand: New Zealand endometriosis support and advocacy charity. Same disease focus and patient-support operating model as Endometriosis UK, but serving the NZ geographic market rather than competing directly in the UK.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat4 records

Key risks6 records

Key highlights7 records

Customer concentration

• Facebookfacebook.com/endometriosis.uk.org
• LinkedInlinkedin.com/company/endometriosis-uk
• Instagraminstagram.com/endometriosis.uk

Compliance4 records

Revenue estimate

Valuation estimate

Number of profiles

Profiles2 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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

Frequently asked questions about Endometriosis UK