EB is a devastating genetic skin condition where even gentle touch can cause blistering, raw wounds and extreme pain. It can lead to serious complications, including infection and skin cancer. Living with EB brings constant pain, uncertainty and emotional strain. Many feel isolated and unsure how to manage daily challenges from accessing care to navigating work, relationships and family life. Without the right support, EB can feel overwhelming.

We will provide expert, person-centred support tailored to each individual through our dedicated Community Support Team across the UK. We will offer practical guidance on healthcare, benefits and daily living, alongside financial assistance and specialist equipment. We will also fund highly specialist EB healthcare within the NHS, advocate for individuals, and connect people to a wider support network, ensuring no one faces EB alone.