Open petition: Dedicated funding for Epidermolysis Bullosa and rare skin conditions research
Created by Ciara Burnside
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Increase dedicated, ring-fenced Government funding for research into rare skin conditions, including all forms of Epidermolysis Bullosa (EB), to accelerate the development of effective treatments and support UK clinical trials.
We call on the Government to provide dedicated, ring-fenced funding for research into EB and other rare skin conditions. Children with conditions such as EB experience severe, painful blistering from birth. Promising gene and cell therapies offer real hope, yet research remains significantly underfunded. We urge the Government to ring-fence funding, support clinical trials, and prioritise these conditions within the UK Rare Diseases Framework.
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Government responded to this petition
While funding for research into specific conditions is not usually ring-fenced, we have committed over £108 million for research into skin conditions between 2021/22 and 2025/26 through the NIHR.
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The Government recognises the significant impact that Epidermolysis Bullosa (EB) and other rare skin conditions can have on patients and families, and the importance of research in improving diagnosis, care and treatment. The Department of Health and Social Care funds health and care research through the National Institute for Health and Care Research (NIHR), which invests around £1.8 billion each year across clinical, public health and social care research.
The NIHR does not usually ring-fence funding for specific conditions. Instead, it welcomes applications on any aspect of human health and care, including EB and other rare skin conditions. Applications compete through open, transparent peer review and are assessed on scientific quality, value for money, importance to patients and the public, and relevance to health and care services. This approach is intended to ensure that the strongest proposals with the greatest potential to benefit patients are funded, whilst allowing researchers to respond to emerging evidence and priorities.
The Government is supporting research in this area. Between 2021/22 and 2025/26, the Department committed £108.16 million through the NIHR to new research projects and support for infrastructure within the health research category covering skin conditions. This included £1.075 million for projects and infrastructure specifically related to EB.
NIHR-supported EB research covers advanced treatments, symptom management, supportive care and better care co-ordination. Studies have tested cell treatments for recessive dystrophic EB. Researchers are also looking at ways to repair the faulty COL7A1 gene and use patients’ own genetically corrected cells to treat EB. Other research aims to improve daily life by developing gloves to help prevent tightening of the hands, nutritional products that are gentler on the mouth, longer-lasting eye drops, and better treatments for severe itching and skin damage. The NIHR also supports research into new genetic and other treatments for several other rare skin conditions.
The NIHR also supports research infrastructure that enables high-quality translational, clinical and applied studies to be developed and delivered. Wider Government investment includes the £14 million Rare Disease Research UK Platform, jointly funded by the NIHR and the Medical Research Council, and UK participation in the European Rare Diseases Research Alliance. These initiatives strengthen collaboration, give UK researchers access to international projects and trials, and help promising discoveries progress towards improved diagnosis and treatment.
Research priorities are also informed by patients, carers and clinicians. In April 2026, the James Lind Alliance published its top 10 research priorities for EB. The NIHR provides core funding for the Alliance’s infrastructure and offers funding opportunities for research addressing priorities identified through this process. Patients, carers and professionals may also suggest research topics directly to the NIHR.
The UK Rare Diseases Framework supports improvements in diagnosis, professional awareness, co-ordinated care and access to specialist treatment. Research into EB and other rare skin conditions can contribute to each of these priorities. The Government will therefore continue to support the research environment, welcome high-quality funding applications and work with patients, researchers, charities and other partners to advance understanding and develop better treatments and care. However, it does not plan routinely to set condition-specific funding targets, as competitive assessment remains the best means of directing public funding to research with the strongest evidence and greatest potential patient benefit.
Department of Health and Social Care
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This petition will stay open until 27 January 2027.