Cure EB
Cure EB is a UK-registered charity (founded 2012 as Sohana Research Fund, rebranded 2025) that raises and deploys donations to fund Epidermolysis Bullosa research across gene therapy, stem cell, drug, and symptom-relief approaches. It has cumulatively raised £20m, funded 42 projects, and co-invests in EB-focused biotechs including Healome and Eliksa Therapeutics.
- Company typePrivate
- Founded2012
- HeadquartersLondon, United Kingdom
- Headcount1–10
- GTM typeB2C
- OfferingServices
What Cure EB does
Cure EB is a UK-registered charity (no. 1158672) founded in 2012 as the Sohana Research Fund and rebranded to Cure EB in October 2025, headquartered at 175-185 Grays Inn Road, London. Its sole mandate is to raise and deploy funds for scientific research aimed at finding treatments and ultimately a cure for Epidermolysis Bullosa (EB) — an incurable, progressive, and painful genetic skin-blistering condition that, in severe forms, produces wounds comparable to severe burns and predisposes patients to skin cancer. Cure EB does not develop proprietary technology itself; instead it channels donations into a portfolio of 42 funded research projects spanning gene therapy, stem cell therapy, small-molecule drug therapy, and symptom-relief approaches, and operates flagship programs including Mission EB (a large-scale mesenchymal-stem-cell clinical trial for RDEB run in partnership with Great Ormond Street Hospital and NIHR) and the Family Forum community for EB families.
Its operating model is community-led philanthropy rather than commercial product revenue. Fundraising is conducted via donations, Gift Aid, corporate partnerships, trusts and foundations, schools engagement, a merchandise shop, third-party platforms (JustGiving, Raisely), and a calendar of in-person and digital events (Butterfly Run at Queen Elizabeth Olympic Park, galas, Butterfly Speaker Lunches, Family Days, Research the Cure evenings at the Royal Institution, Big Give Christmas Challenge, Radio 4 Appeal, Coffee to Cure EB, EBpop, Tongue Twister Challenge). The organization claims 100% of donations are directed to research, and over its lifetime has cumulatively raised £20m, enabled one treatment to reach delivery stage, and contributed to the MHRA approval and NICE evaluation of Krystal Biotech's Vyjuvek (B-Vec) for Dystrophic EB.
Beyond grant-making, Cure EB has begun operating as a venture-stage co-investor in EB-focused biotechs, participating in Eliksa Therapeutics' funding round (2025-10-29, ELK-003 ocular drop) and Healome Therapeutics' oversubscribed £2m seed round (2026-07-07, University of Birmingham eye-drop matrix spinout). It maintains deep partnerships with DEBRA Research (Germany) and DEBRA Brazil — including co-organizing the Innovation Arena at the EB 2026 Congress in São Paulo where it was a gold sponsor. The customer base is segmented into EB patients and families (primary), EB researchers and clinicians (primary), and donors/supporters (secondary), with no traditional paying-customer revenue mechanics.
Cure EB firmographics
Firmographics- Name
- Cure EB
- Legal name
- Cure EB
- Website
- https://cure-eb.org
- Company type
- Private
- Founded year
- 2012
- Operating status
- Operating
- Headcount range
- 1–10 employees
- Short description
- Cure EB is a UK-registered charity (founded 2012 as Sohana Research Fund, rebranded 2025) that raises and deploys donations to fund Epidermolysis Bullosa research across gene therapy, stem cell, drug, and symptom-relief approaches. It has cumulatively raised £20m, funded 42 projects, and co-invests in EB-focused biotechs including Healome and Eliksa Therapeutics.
- Ownership category
- akta.pro rank
Cure EB industry classification
Industry- Product category
- Medical Research Charity
- NAICS
- Voluntary Health Organizations (813212), Grantmaking Foundations (813211), Scientific Research and Development Services (5417)
- SIC
- Services-Social Services (8300)
- akta.pro primary industry
- Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)
- akta.pro secondary industry
- Health & Medical Research Grantmaking Foundations (BPAGAKAL)
Keywords
Where Cure EB is headquartered
LocationHeadquarters
- HQ city
- London
- HQ country
- United Kingdom
- HQ region
- Europe
Offices1 record
Markets served
Cure EB business model
Business model- GTM type
- B2C
- Offering type
- Services
- Cost components
- Personnel, Operations, Marketing or Sales, Others
Revenue model
- Donations and Fundraising: Cure EB raises funds through public donations, event fundraising (Butterfly Run, Gala Events, Family Days), campaigns (Big Give Christmas Challenge, Coffee to Cure EB, EBpop), and corporate partnerships. The organization states that 100% of donations go to fund research.
Go-to-market motion1 record
Distribution channels3 records
Marketing channels9 records
Cure EB product offering
Product offeringCore offering
Cure EB is a UK-registered charity that raises and deploys funds to support scientific research aimed at finding treatments and ultimately a cure for Epidermolysis Bullosa (EB), a rare and painful genetic skin condition. The organization channels donations toward gene therapy, stem cell therapy, drug therapy, and symptom-relief research, and also sells merchandise (such as the Binky's Time to Fly hardback book) to generate additional research funding.
Differentiator
Problem solved
Functional benefit
Brands
- Mission EB: The largest clinical trial of its kind for Recessive Dystrophic Epidermolysis Bullosa (RDEB), testing mesenchymal stromal cell infusions.
- Butterfly Run
- Research the Cure
- Family Forum
Products and services
- Binky's Time To Fly (Hardback Book) An exclusive hardback edition of the children's book 'Binky's Time To Fly' sold through the Cure EB online shop, with proceeds directed to EB research funding.
Quantifiable outcome
- £20 million raised for EB research
- +3 more outcomes
Companies that use Cure EB
Customer profileSegments3 records
Ideal customer profiles3 records
Cure EB technology and API
TechnologyTechnology focussed No
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
Cure EB partnerships and signals
Strategic signalPartnerships
Ten partnerships are on record, tiered core and minor.
- EB 2026 CongresscoreCure EB was a gold sponsor of the EB 2026 Congress held in São Paulo, Brazil. The congress gathered leading EB research funding organizations and DEBRA patient support organizations from across the globe.
- DEBRA ResearchcoreCure EB collaborates with DEBRA Research (Germany), the leading EB research funding organization. Together with DEBRA Brazil, they organized the Innovation Arena at EB 2026 Congress in São Paulo.
- Albert Einstein Research CenterminorPartner venue for the Innovation Arena at EB 2026 Congress organized by DEBRA Brazil and DEBRA Research.
- Krystal BiotechcoreCure EB supported the MHRA approval process for Krystal's Vyjuvek (B-Vec), a topical gene therapy gel for Dystrophic Epidermolysis Bullosa. Sohana Collins and Natasha Hersham participated as patient experts at NICE committee meeting.
- NICE (National Institute for Health Care Excellence)minorCure EB and patients supported the NICE approval process for Vyjuvek by providing case studies of living with DEB and lived experience of using B-Vec.
- Great Ormond Street Hospital (GOSH)coreCure EB collaborated with GOSH and NIHR on Mission EB, the first large-scale stem cell clinical trial for children with EB.
- Royal InstitutionminorCure EB hosts annual Research the Cure Update Evening events at the Royal Institution in London.
- James Lind AllianceminorCure EB partnered on an EB research priority setting project with the James Lind Alliance and several EB charities.
- BGC Charity DayminorAnnual charity trading day event featuring patron Damian Lewis, raising funds for Cure EB.
- Corporate PartnersminorCorporate partnerships for fundraising support, trusts and foundations, and school engagement programs.
Scale indicators4 records
Recent moves7 records
Expansion highlights5 records
Cure EB competitors and assessment
Company assessmentBroad incumbents
- Wellcome Trust: Major UK-based global charitable foundation funding health research including genetic and rare-disease science. Comparable as a large UK health-research grantmaker, but with a far broader portfolio and endowment-driven funding model.
- DEBRA International: Umbrella federation of national EB organisations worldwide. Comparable as an EB-focused umbrella with a broader geographic and operational mandate than Cure EB, and a longer-established brand in EB patient advocacy.
- Cancer Research UK: The UK's largest disease-specific research charity. Comparable as a UK-registered, donation-funded health research grantmaker, but operating at vastly greater scale across cancer rather than EB — a useful benchmark for Cure EB's growth ceiling.
Emerging players
- Krystal Biotech: US biotech that developed Vyjuvek (B-Vec), the topical gene therapy for DEB in which Cure EB played an advocacy role with MHRA and NICE. Comparable as an emerging EB therapeutic developer whose commercial success would amplify Cure EB's mission impact.
- Amryt Pharma (Chiesi): Developer of Filsuvez, the EU-approved gel treatment for EB wounds. Comparable as a company operating in the EB therapeutic space whose regulatory milestones directly affect the EB patient community Cure EB serves.
Others
- NIHR (National Institute for Health and Care Research): UK government funder that co-sponsored the Mission EB clinical trial alongside Cure EB and Great Ormond Street Hospital. Comparable as an upstream research funding body in the EB ecosystem, though operating with public rather than philanthropic capital.
Direct peers
- DEBRA UK: UK-based patient support and research funding charity for people living with EB. Overlaps directly with Cure EB on UK EB families, donor base and research-grant activity, and is the most immediate national competitor for EB-specific philanthropy.
- EB Research Partnership: US-based accelerator and venture philanthropy fund focused exclusively on EB treatment development. Comparable to Cure EB as a disease-specific EB research funder, but with a US-led venture philanthropy model and broader venture investment portfolio.
- DEBRA Research: The leading German EB research funding organisation and Cure EB's closest international peer. Together they co-organised the Innovation Arena at EB 2026 and jointly invested in Eliksa Therapeutics, making them direct comparables on funding scale, grant portfolio and patient-network reach.
Regional players
- DEBRA Brazil: Brazilian EB patient and research support organisation that co-hosted the EB 2026 Congress with Cure EB and DEBRA Research. Directly comparable on EB mission but operates in a different geography and serves a Latin-American patient community.
Market position
Strengths5 records
Weaknesses5 records
Competitive moat4 records
Key risks5 records
Key highlights6 records
Customer concentration
Cure EB social profiles
Digital presenceCure EB financial estimates
Financial estimateRevenue estimate
Valuation estimate
Cure EB leadership team
Management profileNumber of profiles
Profiles2 records
Cure EB funding detail
Funding detailFunding overview
Funding rounds
Investors
Funding detail is available on the Subscription and Enterprise plan.Contact sales →
Cure EB M&A and investment
M&A and investmentM&A
Investments3 records
M&A and investment is available on the Subscription and Enterprise plan.Contact sales →
Frequently asked questions about Cure EB
What does Cure EB do?
Cure EB is a UK-registered charity that raises and deploys funds to support scientific research aimed at finding treatments and ultimately a cure for Epidermolysis Bullosa (EB), a rare and painful genetic skin condition. The organization channels donations toward gene therapy, stem cell therapy, drug therapy, and symptom-relief research, and also sells merchandise (such as the Binky's Time to Fly hardback book) to generate additional research funding.
Is Cure EB a public or private company?
Cure EB is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was Cure EB founded?
Cure EB was founded in 2012. It employs 1 to 10 people.
Where is Cure EB based?
Cure EB is headquartered in London, United Kingdom, in the Europe region.
How does Cure EB make money?
One revenue line is on record: donations and Fundraising.
Who are Cure EB's main competitors?
Broad incumbents on record are Wellcome Trust, DEBRA International and Cancer Research UK. Emerging players are Krystal Biotech and Amryt Pharma (Chiesi). NIHR (National Institute for Health and Care Research) is listed as an others. Direct peers are DEBRA UK, EB Research Partnership and DEBRA Research. DEBRA Brazil is listed as a regional player.
Does Cure EB have an API?
No public API is recorded for Cure EB.
What industry is Cure EB in?
Cure EB's product category is Medical Research Charity. Its primary akta.pro industry code is BPAGACAA, Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS), with a secondary code of BPAGAKAL, Health & Medical Research Grantmaking Foundations. Its NAICS code is 813212 and its SIC code is 8300.