Tuesday, October 28, 2025

EB Awareness Week 2025: Chiesi Rare Diseases strengthens visibility and research for people living with Epidermolysis bullosa

From October 25 to 31, one of the rarest skin diseases takes the spotlight: Epidermolysis bullosa (EB) – also known as the “Butterfly Disease.” The skin of those affected is so fragile that even the slightest touch can cause painful wounds. For many, this means daily pain, complex wound care, and a life full of challenges – but also of incredible strength.

Chiesi Rare Diseases is taking action during this year’s EB Awareness Week with the campaign “Every Touch Tells a Story,” aiming to boost awareness, understanding, and research. The campaign highlights the voices of patients, medical professionals, and experts within the rare disease community.

“EB is rare – and that’s exactly why it’s often overlooked,” says Clara Ziegler, who has lived with EB since birth. “I wish people would stare less and simply ask questions out of genuine curiosity. That would help raise awareness.”

It is estimated that up to 5,000 people in Germany live with EB – though the number may be higher due to underdiagnosis. The more people learn about EB, the greater the understanding, support, and progress in research.

EB refers to a group of genetic disorders that make the skin extremely fragile. Even light friction can cause blisters and wounds. Symptoms range from localized skin irritation to severe multisystem diseases, often appearing in infancy.

For EB Awareness Week, Chiesi is using a variety of formats: The “Rare Stories” podcast gives patients a voice, a short film produced with BBC Storyworks tells their stories, and social media posts share daily life experiences of people living with EB. A dedicated website offers deeper insights from a patient’s perspective: epidermolysis-bullosa.chiesirarediseases.de

“Besides donating to patient support groups, people can help simply by sharing posts about EB,” says Clara. “Sometimes, it’s enough to cook a meal for the family or spend time with an affected child – to give them a small break.”

“We listen – and we act,” emphasizes the team from Chiesi GmbH’s Business Unit Rare Diseases. Chiesi views patients as experts in their own conditions and co-develops solutions with them. The company positions itself as a force for good – aiming to create fair access to therapies for people with rare diseases and to help as many as possible live fulfilling lives.