Global EB Alliance

The Global EB Alliance is a group of more than 20 rare disease and dermatology organisations worldwide supporting EB World Congress and the inaugural EB 2020 event.


DEBRA UK is the only UK charity supporting people suffering from Epidermolysis Bullosa (EB) – a potentially fatal skin condition that causes constant pain due to unstoppable internal and external blistering.

We fund pioneering research for symptom alleviation and, ultimately, a cure.

We provide life changing care and support to the EB Community.

Together we #FightEB, together we will beat EB. Visit to learn more.


LifeArc transforms great science into greater patient benefit. We are the medical research charity with a 25-year legacy of helping scientists and organisations turn their research into practical treatments and diagnostics. We bring together a network of partners to tackle specific diseases and to directly fund academic and early stage research. So far our work has helped to develop four marketed drugs (Keytruda®, Actemra®, Tysabri®, and Entyvio®).

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British Skin Foundation

The British Skin Foundation are the only UK charity that raises money to fund research into all types of skin diseases, including skin cancer.

Sixty percent of British people currently suffer from or have suffered with a skin disease at some point during their lifetime. Whilst some skin conditions are manageable, others are severe enough to kill.

We are here to help change that by raising money for vital research to help find cures and treatments for common skin conditions like eczema or acne, through to potential killers like malignant melanoma.

Founded in 1996, the British Skin Foundation has supported 400 research projects and awarded £16,000,000 in funding across all skin diseases.

Whilst we are dedicated to raising money for research, we also aim to raise awareness of skin diseases in the wider community. We're committed to educating people about the different skin conditions, helping to reduce stigma and promote understanding.

The British Skin Foundation receives no statutory funding and relies on completely on donations. Find out more about our research here.


Acta Dermato-Venereologica is an international peer-reviewed journal for clinical and experimental research in the field of dermatology and venereology. It publishes high-quality manuscripts in English dealing with new observations on basic dermatological and venereological research, as well as clinical investigations. Each volume features a number of Review articles in special areas, Original reports and Short Communications to stimulate debate and to disseminate important clinical observations.

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Hosted by trusted patient advocates, RareConnect is a place where Epidermolysis Bullosa patients and families can connect with others globally. Visit


EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of 826 rare disease patient organisations from 70 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe.

By connecting patients, families and patient groups, as well as by bringing together all stakeholders and mobilising the rare disease community, EURORDIS strengthens the patient voice and shapes research, policies and patient services. Visit


The European Wound Management Association (EWMA) is a European not-for-profit umbrella organisation, linking national wound management organisations, individuals and groups with interest in wound management.