From June 29 to July 1, 2026, the University of Milan will host the International Symposium
“CHOPS and Rare Diseases – Together to Turn Rarity into Opportunity”, promoted by Fondazione CHOPS Malattie Rare ETS.

Following the success of the first edition held at the Children’s Hospital of Philadelphia in 2024, the symposium will take place in Europe for the first time, with the aim of raising awareness of ultra-rare diseases and fostering dialogue among the scientific community, patients, institutions, and society at large.

The initiative will bring together researchers, clinicians, patients, caregivers, and institutional representatives in a comprehensive program that includes:

• scientific sessions featuring international experts in genetics, molecular biology, and translational medicine
• public engagement activities
• dedicated sessions for patients and families

Registration

Participation in the full symposium is open upon registration.

👉 To view the full program and register:
https://chops-symp2026.sciencesconf.org

Art and Science in Dialogue: the “Beyond the Diagnosis” Exhibition

On the occasion of the symposium opening, the international exhibition “Beyond the Diagnosis” will be inaugurated in Europe for the first time. The exhibition is created by the U.S.-based nonprofit Beyond the Diagnosis in collaboration with Fondazione CHOPS.

The exhibition will feature a selection of 20 powerful and deeply human portraits of children and young people living with rare diseases. It will accompany the entire symposium as a space for dialogue between art, science, and human experience, offering an inclusive, person-centered perspective.

The Documentary “Rare”

Alongside the exhibition, the symposium’s public engagement program includes the screening of the documentary Rare, directed by Lainey Moseley and John Beder.

The film follows families living with rare diseases, tracing their complex journeys toward diagnosis and treatment, often driven by the direct involvement of parents.

The screening will be followed by a discussion with director Lainey Moseley.

Dr. David Fajgenbaum will also join remotely. A physician-scientist and one of the film’s protagonists, he is known for developing a treatment that saved his own life from a rare disease (Castleman disease). He is now internationally engaged in advancing new therapies through drug repurposing and innovative technologies.

This initiative is part of the symposium’s broader effort to give voice to patients and promote dialogue between science and society through storytelling tools capable of engaging and raising awareness among a wider audience.

Invitation

Fondazione CHOPS Malattie Rare ETS invites all interested participants to take part in the symposium and contribute to a meaningful moment of dialogue and exchange on rare diseases.

Practical Information

Dates: June 29 – July 1, 2026
Venue: University of Milan
Via Festa del Perdono 7 – Milan, Italy
Opening: June 29, 2026 at 5:30 PM

Registration

Participation in the full symposium is open upon registration.

👉 To view the full program and register:
https://chops-symp2026.sciencesconf.org

Endorsing Bodies and Partners

The symposium is made possible with the support of the University of Milan, Fondazione Cariplo and Cool Cars for Kids.

Official endorsements have been granted by: Municipio 1 Comune di Milano, Polizia di Stato, Italian Medical Association of the Province of Milan, UNIAMO Italian Federation for Rare Diseases, Fondazione Telethon and ISAAC Italy.

We would also like to thank the partners of this initiative:  Beyond the Diagnosis, Inner Wheel Italy Club di Erba Laghi, Helan, Del Pinto e Associati, Persone Medicina e Società, Conca D’oro Viaggi, Occhi dei Bimbi.