DebRA

What DebRA does

DEBRA is a UK-registered charity (England & Wales charity 1084958; Scotland charity SC039654; company limited by guarantee 4118259) that operates as the national patient support organisation for people living with Epidermolysis Bullosa (EB), a group of genetic skin conditions characterised by painful blistering and skin fragility. Founded in 1978 and headquartered in Bracknell, Berkshire, with a stated headcount of 251-500, DEBRA serves nearly 4,000 members, of whom over 1,000 access its specialist support services each year. Its core offering comprises a free membership programme, the EB Community Support Team, an EB Helpline, subsidised holiday homes across the UK, peer support events, NHS-partnered healthcare resources, and an emergency information service for EB patients.

DEBRA is also the largest UK funder of EB research, having invested over £22m cumulatively and is recognised by the Association of Medical Research Charities (AMRC). Its business model is multi-stream and donation-funded rather than technology-product-based: revenue is generated through individual donations, corporate partnerships, charity retail (physical shops plus an eBay store), the DEBRA Lottery, legacies and gifts in wills, and a substantial portfolio of paid fundraising events including the Great Chefs' Dinner, Fight Night, the DEBRA Golf Society, Darts for DEBRA, the Dragon Boat Race, and an extensive runs-and-challenges calendar (marathons, treks, cycling, the Great Wall of China, and the Lake District Challenge). The organisation holds a strong stack of compliance credentials — Fundraising Regulator registration, RoSPA Gold 2024, Investing in Volunteers, British Safety Council Merit 2024, CAF International validation, and CSR Accreditation — and operates a wholly-owned Scotland subsidiary. There is no proprietary technology platform; the digital infrastructure consists of a website used for donations, membership, event registration, and information access, supplemented by social media channels and a helpline chatbot of unspecified sophistication.

Name

DebRA

Legal name

DEBRA

Website

https://debra.org.uk

Company type

Private

Founded year

1978

Operating status

Operating

Headcount range

251–500 employees

Short description

DEBRA is a UK-registered charity, founded in 1978, that supports nearly 4,000 members living with Epidermolysis Bullosa (EB) through free membership services, specialist community support, holiday homes, NHS partnership, and over £22m of cumulative EB research funding.

Ownership category

akta.pro rank

Product category

Patient Support Charity Services

NAICS

Voluntary Health Organizations (813212), Other Individual and Family Services (624190), Grantmaking Foundations (813211)

SIC

Services-Social Services (8300)

akta.pro primary industry

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

Keywords

• Patient support services
• Charity fundraising
• Medical research funding
• Community events programme
• Charity retail

Headquarters

HQ city

Crowthorne

HQ country

United Kingdom

HQ region

Europe

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Others

Revenue model

1. Donations and Fundraising: DEBRA UK raises funds through individual donations, corporate partnerships, trusts and foundations, and community fundraising activities. The organization hosts various fundraising events including runs, challenges, major events, and golf days.
2. Charity Retail: DEBRA UK operates charity shops selling pre-loved items and accepts item donations. They also have an eBay store for online sales.
3. DEBRA Lottery: A charity lottery program where participants can enter for the chance to win prizes, with proceeds supporting EB services and research.
4. Legacies and Gifts in Wills: The organization accepts legacy gifts and legacy donations from supporters who leave bequests in their wills.

Pricing tiers

Distribution channels5 records

Marketing channels8 records

Core offering

DEBRA UK is a registered charity that supports individuals and families affected by Epidermolysis Bullosa (EB) through free membership services, an EB Community Support Team, specialist healthcare information, subsidised holiday homes, and peer support events. It is also the largest UK funder of EB research, having invested over £22m, and sustains this work through diversified fundraising including charity retail shops, a lottery, legacies, donations, grants, corporate partnerships, and a national events programme.

Product overview

DEBRA UK is a charity organization (not a technology product company) focused on supporting people living with Epidermolysis Bullosa (EB), a painful genetic skin condition. The organization provides a suite of services including member support programmes with free membership access to the EB Community Support Team, specialist healthcare resources, and heavily subsidised holiday homes across the UK. DEBRA funds EB research as the largest UK funder of such research, having invested over £22m. Their fundraising activities include charity shops, lottery, corporate partnerships, and an extensive events programme comprising runs and challenges (marathons, cycling, treks), major gala events (Great Chefs' Dinner, Fight Night, Darts events), and the DEBRA Golf Society. The portfolio operates as a unified charity service model rather than a software product platform.

Differentiator

Problem solved

Functional benefit

Brands

• The Butterfly Skin Charity: Tagline identifying DEBRA as a charity focused on EB (epidermolysis bullosa), a skin condition causing skin to blister and tear.

Products and services

• DEBRA UK Member Services

Quantifiable outcome

• Nearly 4,000 members and over 1,000 accessing support services annually
• +3 more outcomes

Named customers1 record

Segments4 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

14 partnerships are on record, tiered core and minor.

• NHScoreStrategic or Co-development PartnerDEBRA UK works in partnership with the NHS to offer an enhanced EB healthcare service, providing specialist support and resources to NHS staff treating EB patients.
• Charity ChallengecoreStrategic or Co-development PartnerMulti-award-winning adventure travel company with 26 years' experience operating challenges on behalf of DEBRA including Great Wall of China Trek, National 3 Peaks, and Winter Toubkal Trek.
• Ultra ChallengecoreStrategic or Co-development PartnerPartner for running and challenge events including Lake District Challenge and other Ultra Challenge Series events.
• Discover AdventureminorStrategic or Co-development PartnerAdventure challenge operator for DEBRA fundraising events.
• Charity Challenge (Great Wall of China)coreStrategic or Co-development PartnerOperates exclusive DEBRA challenges including Great Wall of China Trek.
• Isaacs Wealth & BenefitsminorGTM or Marketing PartnerCorporate sponsor of DEBRA Golf Society.
• Chevening FinancialminorGTM or Marketing PartnerCorporate sponsor of DEBRA Golf Society.
• FitzdaresminorGTM or Marketing PartnerCorporate sponsor of DEBRA Golf Society.
• Corinium TravelminorGTM or Marketing PartnerCorporate sponsor of DEBRA Golf Society and Heritage Cup Order of Merit competition.
• Heritage Resorts and GolfcoreGTM or Marketing PartnerSponsors the Heritage Cup - DEBRA Golf Society Order of Merit competition.
• Bolt & NutminorGTM or Marketing PartnerCorporate sponsor of DEBRA Golf Society (specialised bolting solutions).
• Matthew Wailes LondonminorGTM or Marketing PartnerCorporate sponsor of DEBRA Golf Society (bespoke carpets and rugs).
• Vizion (Vizion Collective)minorGTM or Marketing PartnerCorporate sponsor supporting DEBRA UK Golf Day at Bearwood Lakes Golf Club, with representatives from Vizion Vehicle Solutions, AutoFlow, and Cornerstone Technologies Ltd.
• Various Golf Courses (St George's Hill, Hankley Common, Bearwood Lakes, etc.)coreStrategic or Co-development PartnerPrestigious UK golf courses hosting DEBRA Golf Society events throughout 2026.

Scale indicators6 records

Recent moves6 records

Expansion highlights6 records

Direct peers

• Macmillan Cancer Support: UK charity providing patient support, information, and financial assistance to people affected by cancer. Closely comparable to DEBRA in being a UK-only, disease-specific patient-support charity with a multi-channel fundraising model including retail shops, legacies, and major events.
• Muscular Dystrophy UK: UK charity supporting individuals and families affected by muscular dystrophy and related neuromuscular conditions. Closely mirrors DEBRA's rare-genetic-disease model combining direct patient/family support services with research grantmaking.
• Cystic Fibrosis Trust: UK charity for people with cystic fibrosis, delivering patient support, information, and research funding. Operates the same charity-retail-plus-events-plus-grants model as DEBRA and serves a similarly small rare-disease UK population.
• Parkinson's UK: UK charity funding research and providing support services for people living with Parkinson's. Comparable in operating model (research grants + community support + fundraising events) and disease-specific positioning to DEBRA.
• Versus Arthritis: UK charity supporting people with arthritis through research funding, community support, and information services. Shares DEBRA's disease-specific patient-support-and-research-funding hybrid model.
• Alzheimer's Research UK: UK charity dedicated to research funding for dementia and Alzheimer's disease. Highly comparable research-grantmaking model and a peer in the 'disease-specific medical research charity' category.

Broad incumbents

• British Heart Foundation: One of the UK's largest health charities with an extensive charity-shop network and significant medical research funding portfolio. Represents a scaled incumbent in the same disease-charity category, illustrating the upside path for DEBRA's retail and research engines.
• Cancer Research UK: The UK's largest dedicated cancer research charity, with major retail and event fundraising operations. Sets the upper-bound benchmark for UK disease-specific research charity scale, fundraising yield, and brand reach.
• Wellcome Trust: Major UK-based global charitable foundation funding biomedical research, including rare-disease programmes. A peer in scale and remit of medical research grantmaking and represents a potential institutional funding counterpart for DEBRA's research programme.

Others

• DEBRA International: Umbrella network of national EB charities across Europe and beyond. Functions as the natural international federation counterpart to DEBRA UK and the principal channel for cross-border EB research collaboration.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks6 records

Key highlights7 records

Customer concentration

• YouTubeyoutube.com/@CharityDebra
• Facebookfacebook.com/DEBRACharity
• LinkedInlinkedin.com/company/debra-uk
• Instagraminstagram.com/charitydebra
• Xx.com/charitydebra

Compliance9 records

Revenue estimate

Valuation estimate

Number of profiles

Profiles5 records

Subsidiaries1 record

Funding overview

Funding rounds

Investors

Funding detail is available on the Subscription and Enterprise plan.Contact sales →

M&A

Investments1 record

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

Frequently asked questions about DebRA