The timing couldn’t be more perfect. On June 16, 2026, the newly published “Rome Charter on Rare Diseases” made headlines, signaling Italy’s bid to steer the European Union toward equal health access, structured public-private networks, and unified data sharing for 30 million rare disease patients.

But a charter is a vision—a political and strategic blueprint. For a blueprint to work, it needs an engine.

Enter CoMPaSS-NMD (Computational Models for New Patient Stratification Strategies of Neuromuscular Disorders). As an elite, Horizon Europe-funded project, CoMPaSS-NMD isn’t just anticipating the future laid out by Health Minister Orazio Schillaci and Undersecretary Marcello Gemmato; we are actively building it.

Here is how CoMPaSS-NMD serves as the operational leader, turning the high-level pillars of the Rome Charter into real-world clinical practice for hereditary neuromuscular diseases (HNMDs).

Ending the “Diagnostic Odyssey” via Precision AI

The Rome Charter highlights a painful reality echoed by Uniamo President Annalisa Scopinaro: rare disease patients wait an average of 4 to 5 years just to get a correct diagnosis.

While the Charter calls for updated essential levels of care and extended screening, CoMPaSS-NMD tackles the root biological complexity. Neuromuscular diseases affect roughly 500,000 Europeans, yet over 60% of them lack a clear molecular diagnosis because different genetic mutations can trigger identical physical symptoms.

Instead of treating this as an impossible puzzle, CoMPaSS-NMD uses advanced Artificial Intelligence and Machine Learning to process multi-modal data simultaneously:

  • Genomics (DNA analysis)
  • Muscle MRI Imaging
  • Histopathology (tissue biopsies)
  • Standardized Clinical Profiles

By training algorithms to recognize hidden patterns across these fields, CoMPaSS-NMD expects to increase the correct diagnostic rate by 30%, drastically shortening the years of agonizing uncertainty for families.

The ATLAS Platform: The Data Infrastructure Europe Demands

Minister Schillaci noted that European leadership requires “structured cooperation based on shared infrastructure and interoperable data.”

CoMPaSS-NMD is already delivering exactly that through our flagship innovation: the ATLAS Platform.

ATLAS isn’t just another database; it’s a dynamic, AI-validated digital map of hereditary neuromuscular conditions. To prevent patients from “disappearing” from the care pathway—a major concern highlighted in the Rome Charter—ATLAS uses Standard Operating Procedures (SOPs) and the Human Phenotype Ontology (HPO) to establish a unified medical language across borders. Whether a patient is in Rome, Paris, Helsinki, or London, their disease profile is fully interoperable, readable, and actionable.

Fueling the Pipeline for Innovative Treatments

Farmindustria President Marcello Cattani highlighted a sobering statistic at the Rome conference: only 5% of the estimated 10,000 orphan diseases have an approved treatment. To solve the remaining 95%, the industry needs real-world data and clearer patient classification.

This is where CoMPaSS-NMD shifts from a diagnostic tool to a therapeutic catalyst. Through patient stratification—grouping individuals by shared deep biological and clinical traits rather than vague outward symptoms—we provide the pharmaceutical industry with highly defined “superclusters” of patients.

Why this matters for clinical trials: Better patient stratification means pharmaceutical companies can design faster, cheaper, and far more accurate clinical trials. It takes the guesswork out of patient recruitment, showing exactly who will benefit from a targeted, innovative therapy.

A Strategic Alliance for the Future

The Rome Charter calls for a “strategic alliance” between public institutions, researchers, industry, and patients. CoMPaSS-NMD is the living embodiment of that alliance. Our consortium bridges top-tier clinical centers across Italy (like UNIMORE and Fondazione Stella Maris), international European clinical and research centers ( Ludwig-Maximilians-Universität München, CERBM, Folkhälsan Research Center, The John Walton Muscular Dystrophy Research Centre at the Centre for Life at the Newcastle Upon Tyne Hospital and University),  and tech pioneers in medical informatics (like Fincons Group and the Silesian University of Technology).

Italy is rightfully claiming a leadership role in European healthcare policy this week. By integrating complex science with cutting-edge artificial intelligence, CoMPaSS-NMD is proving that the ambitious goals of the Rome Charter are not just achievable—they are already well underway.

Join the Movement

We are actively training the next generation of data-driven clinicians through our Young Investigator Training (YIT) program and collaborative workshops. 

Want to explore how CoMPaSS-NMD is changing the future of medicine? 

Learn more about the ATLAS platform and our training initiatives.