Cure EB

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.

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

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

• Rare disease research funding
• Epidermolysis bullosa charity
• Nonprofit medical research
• Community fundraising events
• Donor-supported biotech investment

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, Others

Revenue model

1. 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

Core 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

Segments3 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Ten partnerships are on record, tiered core and minor.

• EB 2026 CongresscoreStrategic or Co-development Partner · 1 January 2026Cure 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 ResearchcoreStrategic or Co-development PartnerCure 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 CenterminorStrategic or Co-development PartnerPartner venue for the Innovation Arena at EB 2026 Congress organized by DEBRA Brazil and DEBRA Research.
• Krystal BiotechcoreStrategic or Co-development PartnerCure 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)minorStrategic or Co-development PartnerCure 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)coreStrategic or Co-development PartnerCure EB collaborated with GOSH and NIHR on Mission EB, the first large-scale stem cell clinical trial for children with EB.
• Royal InstitutionminorStrategic or Co-development PartnerCure EB hosts annual Research the Cure Update Evening events at the Royal Institution in London.
• James Lind AllianceminorStrategic or Co-development PartnerCure EB partnered on an EB research priority setting project with the James Lind Alliance and several EB charities.
• BGC Charity DayminorStrategic or Co-development PartnerAnnual charity trading day event featuring patron Damian Lewis, raising funds for Cure EB.
• Corporate PartnersminorGTM or Marketing PartnerCorporate partnerships for fundraising support, trusts and foundations, and school engagement programs.

Scale indicators4 records

Recent moves7 records

Expansion highlights5 records

Broad 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

• Xtwitter.com/cure_eb
• Facebookfacebook.com/cureeb
• LinkedInlinkedin.com/company/cure-eb

Revenue estimate

Valuation estimate

Number of profiles

Profiles2 records

Funding overview

Funding rounds

Investors

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

M&A

Investments3 records

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

Frequently asked questions about Cure EB