Rotary Club of Tarbes Celebrates Two Decades of Solidarity

The Rotary Club of Tarbes and the City of Tarbes have announced a major charity event to mark two decades of support for individuals living with Xeroderma Pigmentosum, a rare and severe genetic condition. On May 7, 2026, the Théâtre des Nouveautés will host a K-POP performance featuring dancers from the ATLAS, TERPSI, and SYNCHRONIX companies to raise funds for specialized medical and protective equipment.

The initiative was detailed during a press conference held on April 30, 2026, by Mélanie Pellen, president of the Rotary Club of Tarbes, Jean-François Orignac, a member of the club’s office, and Pascal Claverie, the mayor of Tarbes. The event celebrates 20 years of the club’s partnership with the association Les Enfants de la Lune, a national organization dedicated to supporting those affected by the disease.

Understanding Xeroderma Pigmentosum

Xeroderma Pigmentosum, often referred to as the “Children of the Moon” disease, is a rare genetic pathology that prevents the body from repairing damage caused by ultraviolet (UV) rays. Because of this deficiency, even minimal exposure to sunlight can lead to severe burns and the early development of skin cancers.

The condition imposes extreme constraints on daily life. Affected individuals must remain permanently protected from the sun and certain sources of artificial light. In France, between 3 and 5 new cases are diagnosed annually, with approximately 100 people currently under medical care, ranging in age from 3 to over 40 years.

C’est un bouleversement du rythme de vie. L’enfant ne peut pas être à l’extérieur naturellement, et même à l’intérieur, tout doit être adapté.

Jean-François Orignac, Rotary Club de Tarbes

Medical experts and organizers emphasize that early diagnosis is critical, as detecting the disease sooner allows for more effective limitation of UV-induced damage.

Support Systems and Equipment Needs

Founded on October 17, 2000, near Dax, the association Les Enfants de la Lune now comprises 220 members and donors. The organization provides a multi-dimensional support system for families, including psychological counseling, the organization of adapted trips, and support for medical research.

A primary focus of the association is the procurement of photoprotection equipment. The funds raised during the May 7 event will be used to purchase essential specialized gear, including:

• Anti-UV helmets and visors
• Technical protective clothing
• UV filters for homes and vehicles
• UV measurement devices
• Non-emissive adapted lighting

These tools are necessary to ensure that affected children can safely move, learn, and interact with their environment.

The event will also feature a personal perspective on the condition, with the attendance of Nayma Bacar Ali, a 23-year-old living with Xeroderma Pigmentosum.

Mayor Pascal Claverie confirmed the city’s ongoing commitment to the cause, noting that the municipality provides the theater and technical teams to support the Rotary Club’s efforts.