We are thrilled to announce that CoMPaSS-NMD has been featured in a major spotlight article in the latest issue of Projects Magazine, published by research dissemination agency Insight Media. The feature, titled "COMPASS-NMD: Structuring uncertainty in neuromuscular disease," explores how our Horizon Europe-funded consortium is redefining the diagnostic and clinical landscape for patients living [...]
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 [...]
A patient-led association is helping improve lives and accelerate research into rare neuromuscular diseases. The Association ASERMUDE is a Spanish non-profit organization that works to improve the quality of life of people affected by neuromuscular diseases and their families. Its work focuses on providing comprehensive support, reliable information, and ongoing guidance to those living [...]
Artificial intelligence, or AI, is a broad term for computer systems that can perform tasks that usually require human thinking, such as recognizing patterns, organizing information, and supporting decisions. Machine learning is one of the main approaches within AI. It allows computers to learn from data and improve over time, rather than simply following [...]
The journey to a diagnosis for rare neuromuscular diseases (NMDs) is often a long and difficult one. Patients frequently navigate a complex "diagnostic journey" that can stretch over years, involving a myriad of tests—from MRIs and biopsies to genetic screening—often scattered across different departments and timeframes. In December, the fourth CoMPaSS-NMD webinar introduced a [...]
For many living with rare diseases, the "diagnostic odyssey" is a gruelling reality—a path often marked by years of uncertainty, misdiagnoses, and emotional strain. On 12 February 2026, the CoMPaSS-NMD project will take a significant step towards shortening this journey as we host a major press conference at the Sala Stampa of the Chamber [...]
Rare diseases are anything but rare when you look at the collective impact. While individual conditions are uncommon, around 350 million people worldwide are affected by a rare disease. Within this massive group are Neuromuscular Diseases (NMDs). Collectively, NMDs affect about half a million individuals—a population roughly the size of a country like Poland. [...]
For many years, most neuromuscular disorders were considered monogenic diseases: conditions caused by mutations in a single gene, leading to a well-defined clinical picture. This “one gene – one disease” model worked well to explain many rare disorders and remains a cornerstone of medical genetics. However, research on neuromuscular and other disorders has shown [...]
"Navigating NMDs: Your CoMPaSS to Care," a new series of four engaging and accessible webinars designed to shed light on these conditions and the future of their diagnosis and treatment. Feeling lost in the complex world of rare neuromuscular diseases (NMDs)? You're not alone. Navigating the journey from diagnosis to care can be [...]
A groundbreaking study from the University of Modena and Reggio Emilia (UNIMORE) is changing our understanding of facioscapulohumeral muscular dystrophy (FSHD), a prevalent hereditary muscle disorder. Published in the esteemed journal Nucleic Acids Research, the research identifies a novel molecular mechanism involving a long non-coding RNA (lncRNA) called FRG2A-t, shedding new light on how [...]
