Le Ali di Camilla is a non-profit organization founded in July 2019 to advance research, treatment, and support for individuals affected by rare skin diseases and epithelial disorders. The organization focuses particularly on conditions treatable with advanced epithelial stem cell therapies, such as Epidermolysis Bullosa (EB) – a rare and life-altering genetic disease for which no definitive cure exists.

Building on decades of research and commitment from its founders in regenerative medicine, Le Ali di Camilla collaborates closely with the renowned Centre for Regenerative Medicine Stefano Ferrari at the University of Modena and Reggio Emilia. Under the leadership of Prof. Michele De Luca, this center pioneered the world’s first successful application of gene therapy for EB. Patients from across Italy and abroad travel to Modena for treatment, clinical studies, and research participation, with numbers steadily increasing. Le Ali di Camilla provides comprehensive support, including up-to-date information on research, diagnostics, and treatments, as well as practical assistance. This includes reimbursement of travel expenses, on-site support for extended stays, and accommodation arrangements near the clinical center. To amplify its impact, the organization partners with EB-focused groups such as Debra Südtirol Alto-Adige and Olly Onlus and collaborates with Italian organizations like Telethon and ASEOP.

Epidermolysis Bullosa (EB), often called the “butterfly children’s disease”, is a rare and severe genetic disorder that makes the skin and internal mucous membranes as fragile as butterfly wings. Children with EB are highly vulnerable to injury: everyday activities such as eating, drinking, sleeping, walking, holding objects, playing, or even receiving affectionate gestures can cause painful wounds. These injuries require extensive daily bandaging and significantly impact both the quality and expectancy of life. EB presents in different forms, with varying degrees of severity. Tragically, the most severe cases are incompatible with life, and affected newborns rarely survive beyond the first few months. This was the heartbreaking reality for two infants, both named Camilla, born in December 2017 and passing away in 2018. In their memory, Le Ali di Camilla was founded.

Le Ali di Camilla is developing a fully equipped, accessible residence near Modena University Hospital to support patients with rare dermatological conditions and their families. Designed to accommodate both short-term (a few days) and long-term stays (months, particularly for newborns requiring extended care), the facility will provide a much-needed refuge for families facing the immense challenges of EB. This project aims to ease the burden of long-distance medical stays while fostering a sense of community among affected families. Ultimately, this “home for butterfly children” will serve as a model for similar initiatives worldwide, bridging the gap between families and cutting-edge medical research and treatment.

The Nando and Elsa Peretti Foundation (NaEPF) has a long-standing commitment to advancing health promotion and medical research, recognizing the profound impact of supporting individuals with rare diseases. In 2023, the NaEPF awarded a grant to Le Ali di Camilla in memory of Dr. Yvonne Katharina Schmucker, a dermatologist and dear friend of the Foundation. This grant will fund the construction of the new residence, ensuring a vital space where EB-affected children and their families can receive the care and support they need. Through this initiative, NaEPF reaffirms its dedication to dignity, resilience, and the well-being of vulnerable communities.

“A Home for Camilla”: thanks to the Nando and Elsa Peretti Foundation support, the construction of a house for medical visits and treatments for “Butterfly Children” has begun in Modena, Italy.

In 2023, the Nando and Elsa Peretti Foundation (NaEPF) awarded a grant to the association Le Ali di Camilla in memory of Dr. Yvonne Katharina Schmucker, a dermatologist and friend of NaEPF. For years, the association has been committed to improving the quality of life for individuals affected by Epidermolysis Bullosa (EB), providing essential, tangible support to children and families facing complex medical challenges. Epidermolysis Bullosa, often called the “butterfly children’s disease”, is a rare and severe genetic disorder that makes the skin and internal mucous membranes as fragile as butterfly wings. Children with EB are highly vulnerable to injury: everyday activities such as eating, drinking, sleeping, walking, holding objects, playing, or even receiving affectionate gestures can cause painful wounds.

Thanks to NaEPF’s support, a new facility dedicated to “butterfly children” and their families will be built in Modena, offering them a safe and welcoming environment near the city hospital. Here, they will receive assistance and support during multidisciplinary visits and hospital stays, alleviating the burden of a condition that requires constant care.

“With this initiative, the Nando and Elsa Peretti Foundation reaffirms its commitment to the dignity, resilience, and well-being of the most vulnerable individuals, supporting interventions that address urgent and concrete needs. The Foundation firmly believes that ensuring equitable access to care and excellence in research is essential to building a fairer and more inclusive society,” said Sara Tescione, Program Manager and Grant Advisor of the Nando and Elsa Peretti Foundation, during the laying of the first stone, February 22, 2025.

The public event, marking the laying of the first stone for Camilla’s house, was held at the presence of local authorities, citizens, and supporters. This event was part of the Association’s annual meeting, which focuses on individuals with Epidermolysis Bullosa, as well as their families, researchers, healthcare professionals, and advocates. Attendees included Professor Michele de Luca, Director of the Center for Regenerative Medicine and the Interdepartmental Center for Stem Cells and Regenerative Medicine at the University of Modena and Reggio Emilia, the parish priest of San Lazzaro Parish (on whose land the house will be built), and the Association’s President, Stefania Bettinelli, who during the event added:

“We are grateful to the Nando and Elsa Peretti Foundation, and we are deeply moved by the thought that it is thanks to the help of a dermatologist we never met—someone who lived and worked so far from here, like Dr. Schmucker—that our butterfly children and adults will have a home built for them when they come to Modena for visits with dermatologists and other specialists of the EB. Solidarity truly knows no borders and finds paths we could never have imagined.”

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