PaLaDIn PROMs Workshop: Aligning Experiences and Defining the State of the Art in Rare Diseases

The PaLaDIn PROMs workshop will take place in Rome on September 17th and 18th, 2026, at the Hotel Ripa Roma, Via degli Orti di Trastevere, 3.

Since the beginning of PaLaDIn, we have become aware of several initiatives and projects that are also working on PROMs in rare diseases. To avoid duplication and, importantly, to strengthen collaboration across the field, we would like to convene a workshop that will bring together all relevant projects and stakeholders. The purpose of this workshop is to better understand the State of the Art in PROMs in neuromuscular and rare diseases, identify potential synergies and opportunities to build upon what is already available, ensuring that the patient voice is included.

We will gather for a quick lunch at the hotel at around 1:00 pm on September 17th .The meeting will begin at 2:00 pm.

At the end of the first day, we will have dinner at Trattoria Dal Cordaro at 8.00 p.m.

The meeting will conclude on September 18th around 3:00 p.m.

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Dinner cancellations will only be accepted up to 10 days prior to the event; after this deadline, the cost will be charged to the participant and cannot be covered by the organizers.

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