Compass-nmd

25/11/2025

📢 The third CoMPaSS-NMD webinar has just started!


We're currently LIVE discussing a vital topic in medical research: Protecting Patient Privacy in AI Development for Neuromuscular Diseases!

Our experts, Ainara and Michael, are explaining how the CoMPaSS-NMD project is pioneering "Privacy by Design" using cutting-edge technologies.

🔑 Key Takeaways from the Session:

✔️ GDPR & Health Data: Why genetic and clinical records require the highest level of protection and the critical role of Informed Consent.

✔️ Decentralized AI: We're moving beyond traditional centralized data collection! We use Federated Learning to train AI models across multiple hospitals without ever moving sensitive patient data to a central server.

✔️ Extra Security Layers: Implementing techniques like Differential Privacy (adding subtle "noise" to model updates) and Homomorphic Encryption (allowing calculations on encrypted data) for maximum confidentiality.

🎯 Scientific progress and ethical responsibility go hand-in-hand. We prove that privacy and AI development are compatible to accelerate diagnosis for rare diseases.

Join the conversation and learn how we're building the foundation for ethical AI in healthcare!

17/11/2025

🛡️ 𝗪𝗲𝗯𝗶𝗻𝗮𝗿 𝗔𝗹𝗲𝗿𝘁: 𝗬𝗼𝘂𝗿 𝗦𝗲𝗻𝘀𝗶𝘁𝗶𝘃𝗲 𝗗𝗮𝘁𝗮: 𝗦𝗲𝗰𝘂𝗿𝗲 𝗮𝗻𝗱 𝗛𝗮𝗻𝗱𝗹𝗲𝗱 𝘄𝗶𝘁𝗵 𝗖𝗮𝗿𝗲

Join us for our third in-depth webinar focusing on the critical management of sensitive health data.
In today's digital landscape, the security and privacy of your health information are paramount. We'll provide a clear explanation of the robust measures we are adopting to guarantee its security and privacy, ensuring full compliance with European regulations.

📅 𝗘𝘃𝗲𝗻𝘁 𝗗𝗲𝘁𝗮𝗶𝗹𝘀
Topic: Your Sensitive Data: Secure and Handled with Care
Date: 𝗧𝘂𝗲𝘀𝗱𝗮𝘆, 𝟮𝟱 𝗡𝗼𝘃𝗲𝗺𝗯𝗲𝗿 𝟮𝟬𝟮𝟱
Time: 𝟱:𝟬𝟬 𝗣𝗠 𝗖𝗘𝗧
Speakers: Ainara Garzo Manzanares & Michael Obach from TECNALIA Research & Innovation

🎙️ 𝗠𝗲𝗲𝘁 𝘁𝗵𝗲 𝗘𝘅𝗽𝗲𝗿𝘁𝘀
Ainara Garzo: Holds a PhD in Computer Science Engineering (2021). Her research focuses on user-centred design, bioethics, and personal data protection. She is an active participant in an Ethical Committee for Research with Humans since 2018.
Michael Obach: Holds a PhD in Mathematics/Computer Science (2003) focused on neural networks. Since 2007, he has worked at TECNALIA as a Senior Researcher and Project Manager, specializing in AI and data analytics in health.

🔑 𝗞𝗲𝘆 𝗧𝗮𝗸𝗲𝗮𝘄𝗮𝘆𝘀
We will dive into the concepts of Security, Privacy, Sensitive Data, and innovative approaches like Federated Learning to protect health data while enabling crucial research.

Don't miss this essential session on health data governance and protection!

Official webinar language is English, but professional simultaneous translation into Italian and German will be provided.
REGISTER HERE:
EN: https://lnkd.in/dP4rVntA
ITA: https://lnkd.in/dve58wHU
DE: https://lnkd.in/d5zDvtTd

Registration is free and grants you access to all four live webinars. Can’t make it live? Register anyway to receive the recordings.

10/11/2025

🚀 𝗧𝗮𝗰𝗸𝗹𝗶𝗻𝗴 𝘁𝗵𝗲 𝗗𝗶𝗮𝗴𝗻𝗼𝘀𝗶𝘀 𝗖𝗿𝗶𝘀𝗶𝘀 𝗶𝗻 𝗡𝗲𝘂𝗿𝗼𝗺𝘂𝘀𝗰𝘂𝗹𝗮𝗿 𝗗𝗶𝘀𝗲𝗮𝘀𝗲𝘀 (𝗡𝗠𝗗𝘀)!

𝘋𝘪𝘥 𝘺𝘰𝘶 𝘬𝘯𝘰𝘸 𝘵𝘩𝘢𝘵 𝘕𝘔𝘋𝘴 𝘤𝘰𝘭𝘭𝘦𝘤𝘵𝘪𝘷𝘦𝘭𝘺 𝘢𝘧𝘧𝘦𝘤𝘵 𝘢𝘣𝘰𝘶𝘵 𝘩𝘢𝘭𝘧 𝘢 𝘮𝘪𝘭𝘭𝘪𝘰𝘯 𝘱𝘦𝘰𝘱𝘭𝘦—𝘢 𝘱𝘰𝘱𝘶𝘭𝘢𝘵𝘪𝘰𝘯 𝘳𝘰𝘶𝘨𝘩𝘭𝘺 𝘵𝘩𝘦 𝘴𝘪𝘻𝘦 𝘰𝘧 𝘢 𝘤𝘰𝘶𝘯𝘵𝘳𝘺? 𝘋𝘦𝘴𝘱𝘪𝘵𝘦 𝘵𝘩𝘦 𝘴𝘩𝘦𝘦𝘳 𝘯𝘶𝘮𝘣𝘦𝘳, 𝘵𝘩𝘦 𝘫𝘰𝘶𝘳𝘯𝘦𝘺 𝘵𝘰 𝘢 𝘱𝘳𝘦𝘤𝘪𝘴𝘦 𝘥𝘪𝘢𝘨𝘯𝘰𝘴𝘪𝘴 𝘳𝘦𝘮𝘢𝘪𝘯𝘴 𝘢 𝘮𝘢𝘴𝘴𝘪𝘷𝘦 𝘤𝘩𝘢𝘭𝘭𝘦𝘯𝘨𝘦.

We may know the genes, but the clinical picture (phenotype) is often chaotic and misunderstood. Up to 40% of NMD patients still lack a confirmed diagnosis, leading to unnecessary anxiety, prolonged suffering, and skyrocketing healthcare costs.

A precise diagnosis is the essential prerequisite for precise care, effective treatment, and a better quality of life.

The CoMPaSS-NMD project is confronting this head-on by building the ATLAS—a single, comprehensive data repository. We are leveraging the power of Machine Learning (ML) and AI to "make order in chaotic datasets," finding patterns that will radically improve the diagnostic journey for every patient.

𝗡𝗠𝗗 𝗰𝗮𝗿𝗲: 𝗯𝗿𝗶𝗱𝗴𝗶𝗻𝗴 𝘁𝗼𝗱𝗮𝘆 𝗮𝗻𝗱 𝘁𝗼𝗺𝗼𝗿𝗿𝗼𝘄 𝗳𝗼𝗿 𝘆𝗼𝘂 was the topic of our first webinar, held by Filippo Santorelli, IRCCS Fondazione Stella Maris, and you can now read the full article on our website!

👉 Read the full article here: https://compass-nmd.eu/2025/11/10/bridging-today-and-tomorrow-the-fight-for-precise-nmd-diagnosis/

🗓️ 𝗗𝗼𝗻'𝘁 𝗠𝗶𝘀𝘀 𝘁𝗵𝗲 𝗡𝗲𝘅𝘁 𝗪𝗲𝗯𝗶𝗻𝗮𝗿𝘀 𝗶𝗻 𝗼𝘂𝗿 '𝗡𝗮𝘃𝗶𝗴𝗮𝘁𝗶𝗻𝗴 𝗡𝗠𝗗𝘀' 𝗦𝗲𝗿𝗶𝗲𝘀!

Join us to continue the conversation on advancing care and data security in NMDs:
Next Webinar on 25 November, 17:00 CET:
Title: Your sensitive data: secure and handled with care
Topic: Learn how CoMPaSS-NMD ensures the highest level of security and ethical handling of patient data.

Register and find more details here: https://eventipro.it/you-compass-to-care-free-webinar-autumn-2025/?language=en

20/10/2025

📢 𝗪𝗘𝗕𝗜𝗡𝗔𝗥 𝗛𝗜𝗚𝗛𝗟𝗜𝗚𝗛𝗧𝗦: 𝗔𝗿𝘁𝗶𝗳𝗶𝗰𝗶𝗮𝗹 𝗜𝗻𝘁𝗲𝗹𝗹𝗶𝗴𝗲𝗻𝗰𝗲 𝗶𝗻 𝗡𝗲𝘂𝗿𝗼𝗺𝘂𝘀𝗰𝘂𝗹𝗮𝗿 𝗗𝗶𝘀𝗼𝗿𝗱𝗲𝗿𝘀 (𝗡𝗠𝗗) 𝗗𝗶𝗮𝗴𝗻𝗼𝘀𝗶𝘀 & 𝗠𝗮𝗻𝗮𝗴𝗲𝗺𝗲𝗻𝘁! 💡

Now on air a fascinating webinar on “AI in NMDs diagnosis, an ally for doctors and patients" by Joanna Polanska of the Silesian University of Technology's Department of Data Science and Engineering (Politechnika Śląska).

AI is rapidly transforming the diagnostic and treatment landscape for complex conditions like Neuromuscular Disorders, offering a path towards faster, more precise, and more patient-centered care!

Here's the takeaway message on how AI supports NMDs:
🔍 𝗗𝗶𝗮𝗴𝗻𝗼𝘀𝗶𝘀
AI facilitates a more accurate and earlier diagnosis through:
- Pattern Recognition in Medical Imaging: Algorithms analyze CT, ultrasound, MRI, and digital histopathology scans to detect lesions, muscle abnormalities, and classify/quantify tissue damage, often at earlier stages than traditional methods.
- Genetic Data Analysis: AI assists in interpreting genetic sequences to identify mutations, predict their impact, and streamline the diagnostic process for gene-related disorders.
- Automated Screening: AI tools can analyze patient data to flag potential NMD cases for early intervention.
- Phenotype Recognition & Variant Interpretation: AI uses Natural Language Processing (NLP) on clinical notes and image analysis (e.g., muscle MRI, gait videos) to suggest candidate diseases or genes and employs machine learning classifiers to predict if a genetic variant is pathogenic.

💊 𝗧𝗿𝗲𝗮𝘁𝗺𝗲𝗻𝘁 & 𝗠𝗼𝗻𝗶𝘁𝗼𝗿𝗶𝗻𝗴
AI is crucial in the subsequent phases of care:
- Personalized Medicine: AI analyzes vast amounts of data—including genetic profiles and clinical trials—to help identify patients who benefit from targeted therapies (like exon-skipping drugs for Duchenne MD) and choose the most effective treatment plans.
-Disease Progression Prediction: Machine learning models track biomarkers and patient characteristics (like muscle strength, gait analysis, and digital health data from wearables) to predict how a disease will progress and how a patient will respond to specific treatments.
- Optimizing Rehabilitation: AI-driven robotics and smart exoskeletons, guided by motion sensors, can be tailored to a patient's specific neuromuscular impairments to improve physical therapy outcomes.
- Continuous Monitoring: Integration with IoT technologies allows for real-time patient health monitoring via wearables and mobile health (mHealth), enabling the early detection of complications.

In short, AI is a powerful research and clinical tool, accelerating everything from drug discovery to patient support! 🚀

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20/10/2025

⏰ Reminder: AI in neuromuscular diseases webinar today!

Don't forget! Join us today at 5:00 PM CEST for an insightful webinar on "AI in NMDs diagnosis, an ally for doctors and patients "!

Artificial Intelligence isn't just a futuristic concept; it's rapidly becoming an essential ally for both doctors and patients dealing with Neuromuscular Disorders (NMDs).

We'll explore faster and more accurate diagnosis.
Discover how AI supports NMD diagnosis through pattern recognition in medical imaging, magnetic resonance imaging data interpretation, and genetic data analysis.

If you're interested in how cutting-edge technology is transforming NMD care, you won't want to miss this!

For patients, doctors, researchers, and anyone curious about the future of healthcare—this webinar is for you.

Register now and join the conversation!

A free webinar series on the future of neuromuscular disease diagnosis and treatment

15/10/2025

💻 Join us for our second webinar: 𝗔𝗜 𝗶𝗻 𝗡𝗠𝗗𝘀 𝗱𝗶𝗮𝗴𝗻𝗼𝘀𝗶𝘀, 𝗮𝗻 𝗮𝗹𝗹𝘆 𝗳𝗼𝗿 𝗱𝗼𝗰𝘁𝗼𝗿𝘀 𝗮𝗻𝗱 𝗽𝗮𝘁𝗶𝗲𝗻𝘁𝘀.

𝗢𝗻 𝗢𝗰𝘁𝗼𝗯𝗲𝗿 𝟮𝟬, 𝟮𝟬𝟮𝟱 𝗮𝘁 𝟱 𝗣𝗠 𝗖𝗘𝗧

Our second webinar of the series 𝗡𝗮𝘃𝗶𝗴𝗮𝘁𝗶𝗻𝗴 𝗡𝗠𝗗𝘀: 𝗬𝗼𝘂𝗿 𝗖𝗼𝗠𝗣𝗮𝗦𝗦 𝘁𝗼 𝗖𝗮𝗿𝗲 will tackle how artificial intelligence can improve the accuracy and speed of diagnosis, offering reassurance and clarity on this emerging technology.

Our webinars are for anyone who wants to learn more about neuromuscular disorders (NMDs) and the importance of a human-centered approach to patient care. We believe that bridging the gap between current knowledge and future advancements is essential for improving the lives of those affected by these conditions.

We're thrilled to have a leading experts in the CoMPaSS-NMD team share her insights:
👩🏻‍💻 Joanna Polanska from the Salesian University of Technology (Politechnika Śląska) has strong experience as a principal investigator leading multiple interdisciplinary projects concerning developing methods for processing and advanced analysis of high-dimensional biological data and medical images.

Official webinar language is English, but professional simultaneous translation into Italian and German will be provided.
REGISTER HERE:
EN: https://eventipro.it/you-compass-to-care-free-webinar-autumn-2025/?language=en

Registration is free and grants you access to all four live webinars. Can’t make it live? Register anyway to receive the recordings.

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ITALIANO

💻 Unisciti a noi per il nostro secondo webinar: L'IA nella diagnosi delle malattie neuromuscolari, un alleato per medici e pazienti.
𝗜𝗹 𝟮𝟬 𝗼𝘁𝘁𝗼𝗯𝗿𝗲 𝟮𝟬𝟮𝟱 𝗮𝗹𝗹𝗲 𝟭𝟳:𝟬𝟬 𝗖𝗘𝗧

Il nostro secondo webinar della serie "Navigare nelle NMD: il tuo CoMPaSS per la cura" affronterà come l'intelligenza artificiale possa migliorare l'accuratezza e la velocità della diagnosi, offrendo rassicurazione e chiarezza su questa tecnologia emergente.

I nostri webinar sono rivolti a chiunque voglia saperne di più sulle Malattie Neuromuscolari (NMD) e sull'importanza di un approccio incentrato sulla persona nell'assistenza ai pazienti. Riteniamo che colmare il divario tra le conoscenze attuali e i progressi futuri sia essenziale per migliorare la vita delle persone colpite da queste patologie.

Siamo entusiasti di ospitare un'esperta di spicco del team CoMPaSS-NMD che condividerà le sue conoscenze:

👩🏻‍💻 𝗝𝗼𝗮𝗻𝗻𝗮 𝗣𝗼𝗹𝗮𝗻𝘀𝗸𝗮 della Salesian University of Technology (Politechnika Śląska) vanta una solida esperienza come ricercatrice principale alla guida di molteplici progetti interdisciplinari, focalizzati sullo sviluppo di metodi per l'elaborazione e l'analisi avanzata di dati biologici ad alta dimensionalità e immagini mediche.

La lingua ufficiale del webinar è l'inglese, ma sarà fornita una traduzione simultanea professionale in italiano e tedesco.

REGISTRATI QUI:
ITA: https://eventipro.it/you-compass-to-care-free-webinar-autumn-2025/?language=it

La registrazione è gratuita e ti garantisce l'accesso a tutti e quattro i webinar in diretta. Non puoi partecipare in diretta? Registrati comunque per ricevere le registrazioni.



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DEUTSCH

💻 Nehmen Sie an unserem zweiten Webinar teil: KI in der Diagnose neuromuskulärer Erkrankungen – ein Verbündeter für Ärzte und Patienten.
Am 20. Oktober 2025 um 17:00 Uhr MEZ

Unser zweites Webinar der Reihe Navigieren durch neuromuskuläre Erkrankungen (NMEs): Ihr Kompass zur Versorgung befasst sich damit, wie künstliche Intelligenz die Genauigkeit und Geschwindigkeit der Diagnose verbessern kann. Wir bieten Klarheit und Sicherheit in Bezug auf diese aufkommende Technologie.

Unsere Webinare richten sich an alle, die mehr über neuromuskuläre Erkrankungen (NMEs) und die Bedeutung eines menschenzentrierten Ansatzes in der Patientenversorgung erfahren möchten. Wir sind davon überzeugt, dass die Überbrückung der Kluft zwischen aktuellem Wissen und zukünftigen Fortschritten unerlässlich ist, um das Leben der von diesen Erkrankungen Betroffenen zu verbessern.

Wir freuen uns sehr, eine führende Expertin aus dem CoMPaSS-NMD-Team begrüßen zu dürfen, die ihre Erkenntnisse mit Ihnen teilen wird:

👩🏻‍💻 Joanna Polanska von der Schlesischen Technischen Universität (Politechnika Śląska) verfügt über große Erfahrung als Hauptforscherin bei der Leitung mehrerer interdisziplinärer Projekte. Diese Projekte befassen sich mit der Entwicklung von Methoden zur Verarbeitung und erweiterten Analyse hochdimensionaler biologischer Daten und medizinischer Bilder.

Die offizielle Webinarsprache ist Englisch, es wird jedoch eine professionelle Simultanübersetzung ins Italienische und Deutsche angeboten.

HIER REGISTRIEREN:
DE: https://eventipro.it/you-compass-to-care-free-webinar-autumn-2025/?language=de

Die Registrierung ist kostenlos und gewährt Ihnen Zugang zu allen vier Live-Webinaren. Sie können nicht live dabei sein? Registrieren Sie sich trotzdem, um die Aufzeichnungen zu erhalten.

FONDAZIONE TELETHON UILDM Unione Italiana Lotta alla Distrofia Muscolare - Direzione Nazionale Ern-Rnd European Reference Network for Rare Neurological Diseases
ACMT Rete per la Charcot Marie Tooth Christopher Castellini - Illusionista della Mente FINCONS GROUP Ludwig-Maximilians-Universität München Unimore - Università degli Studi di Modena e Reggio Emilia

A free webinar series on the future of neuromuscular disease diagnosis and treatment

14/10/2025

CoMPaSS-NMD Shines at the World Muscle Society Congress! ✨

We're thrilled to look back at our participation in the 30th Annual Congress of the (WMS) in Vienna, October 7–11, 2025!

This premier event brought together the largest international community dedicated to understanding muscle physiology and neuromuscular diseases (NMDs), and it was a true honor to showcase the latest advancements from the CoMPaSS-NMD Project.

Our team actively contributed to the congress, highlighting the project’s multidisciplinary and innovative approach to tackling these challenging disorders.

A big round of applause for our experts who presented their groundbreaking work:

🎤 Nuredini (Dipartimento di Scienze Biomediche, Metaboliche e Neuroscienze - Unimore - Università degli Studi di Modena e Reggio Emilia) presented "Computational models for new patient stratification strategies of neuromuscular disorders (CoMPaSS-NMD): a new strategy to tackle hereditary neuromuscular diseases."

📈 Michal Marczyk (Politechnika Śląska) featured a poster on "A general-purpose self-supervised AI model for quantitative analysis of H&E-stained muscle biopsy specimens’ whole-slide images."

📊 Marek Socha (Politechnika Śląska) discussed "Stratification of neuromuscular disorder types based on subregional radiomic features in lower leg MRI."

📉 Aleksandra Suwalska (Politechnika Śląska) presented her research: "A gene-centric scoring approach for the stratification of patients with rare neuromuscular disorders."

The WMS Congress was an extraordinary opportunity to exchange ideas, strengthen collaborations, and share our collective mission: to bring computational and AI-driven innovation into the clinical management of neuromuscular disorders.

A huge thank you to all partners of CoMPaSS-NMD and to the vibrant WMS community for the inspiring discussions and valuable feedback! We're excited to carry this momentum forward.

07/10/2025

The CoMPaSS-NMD "Navigating NMDs: Your CoMPaSS to Care" free webinar series continues!

Join our next webinar which will explore how Computational Models and AI are set to revolutionize the diagnosis and treatment of Neuromuscular Disorders (NMDs).

𝗪𝗵𝗮𝘁 𝗬𝗼𝘂'𝗹𝗹 𝗟𝗲𝗮𝗿𝗻:
✔️ Fill Information Gaps about NMDs and new innovations in care.
✔️Discover how AI can improve diagnostic speed and accuracy.
✔️Understand essential Data Privacy considerations.
✔️Explore the innovative CoMPaSS-NMD Atlas, a tool revolutionizing patient care and the diagnostic journey.

𝗬𝗼𝘂𝗿 𝗦𝘁𝗲𝗽-𝗯𝘆-𝗦𝘁𝗲𝗽 𝗝𝗼𝘂𝗿𝗻𝗲𝘆
Our series is structured to guide you through the world of NMDs, featuring a live Q&A with leading experts in each webinar. You can follow the events in English, Italian and German.

Save the Dates (All webinars start at 5:00 PM CET):
𝟮𝟬 𝗢𝗰𝘁𝗼𝗯𝗲𝗿, 𝟮𝟬𝟮𝟱: featuring Joanna Polanska, Politechnika Śląska
𝟮𝟱 𝗡𝗼𝘃𝗲𝗺𝗯𝗲𝗿, 𝟮𝟬𝟮𝟱: featuring Ainara Garzo Manzanares & Michael Obach, TECNALIA Research & Innovation
𝟭𝟱 𝗗𝗲𝗰𝗲𝗺𝗯𝗲𝗿, 𝟮𝟬𝟮𝟱: featuring Riccardo Corrias, FINCONS GROUPFincons Group

Don't miss out on this deep dive into NMD care!

Let CoMPaSS-NMD be your guide to a brighter tomorrow for NMD diagnosis and treatment.

Visit the webpage and register here: https://eventipro.it/you-compass-to-care-free-webinar-autumn-2025/?language=en

FONDAZIONE TELETHON UILDM Unione Italiana Lotta alla Distrofia Muscolare - Direzione Nazionale -RND, Ern-Rnd European Reference Network for Rare Neurological Diseases ACMT Rete per la Charcot Marie Tooth Unimore - Università degli Studi di Modena e Reggio Emilia Ascape-h2020 Christopher Castellini - Illusionista della Mente Ludwig-Maximilians-Universität München

30/09/2025

🚀🔬 Join the Cutting Edge of Neuromuscular Research! 🔬🚀

𝗖𝗼𝗠𝗣𝗮𝗦𝗦-𝗡𝗠𝗗 𝗬𝗼𝘂𝗻𝗴 𝗜𝗻𝘃𝗲𝘀𝘁𝗶𝗴𝗮𝘁𝗼𝗿 𝗧𝗿𝗮𝗶𝗻𝗶𝗻𝗴 𝗜𝗻𝗶𝘁𝗶𝗮𝘁𝗶𝘃𝗲
The CoMPaSS-NMD project is excited to present the latest session in our Young Investigator Training (YIT) initiative!

YIT is designed to fuel scientific exchange, provide high-quality education, and equip the next generation of researchers in the Neuromuscular Disease (NMD) field with essential skills.

Why YIT?
Our goal is twofold:
🔺 Ensure High-Quality Assessments: Guaranteeing precise clinical assessments conducted by fully qualified clinicians.
🔺 Unite and Empower Young Researchers: Attracting and training young minds in a novel, multimodal, and multidisciplinary approach.

We're preparing you to meet the complex needs of a new generation of NMD patients!

👉🏻 𝗨𝗽𝗰𝗼𝗺𝗶𝗻𝗴 𝗦𝗲𝘀𝘀𝗶𝗼𝗻 𝗛𝗶𝗴𝗵𝗹𝗶𝗴𝗵𝘁: 𝗬𝗜𝗧𝟰 𝗘𝗹𝗲𝗰𝘁𝗿𝗼𝗻𝗶𝗰 𝗚𝗲𝗻𝗲𝘁𝗶𝗰 𝗗𝗮𝘁𝗮 𝗖𝗹𝗶𝗻𝗶𝗰𝗮𝗹 𝗥𝗲𝗽𝗼𝗿𝘁 𝗙𝗼𝗿𝗺 (𝗲𝗚𝗖𝗥𝗙)
Don't miss this crucial training session focusing on the Electronic Genetic data Clinical Report Form (eGCRF). Understanding and utilizing this tool is vital for harmonizing genetic data in clinical research.

📅 Date: 3 October
🕒 Time: 15:00

Featured Speakers:
Ana Topf: Senior Researcher, Newcastle University
Giorgio Caudullo: Business Manager, CeGaT
This is an invaluable opportunity to learn directly from leading experts in the field.
Ready to advance your career and contribute to groundbreaking NMD research?

🔗 Register here: https://forms.gle/ajghwF9dQKW2Wnpm6

22/09/2025

We are live now with the first webinar of the series Navigating NMDs: Your CoMPaSS to Care - 𝗡𝗠𝗗 𝗰𝗮𝗿𝗲: 𝗯𝗿𝗶𝗱𝗴𝗶𝗻𝗴 𝘁𝗼𝗱𝗮𝘆 𝗮𝗻𝗱 𝘁𝗼𝗺𝗼𝗿𝗿𝗼𝘄 𝗳𝗼𝗿 𝘆𝗼𝘂.

Filippo Santorelli is showing this powerful image which perfectly illustrates the profound disparity in how a potential neuromuscular diagnosis is perceived and experienced.

On one side, we see a "word cloud" representing the PARENTS' emotional landscape: overwhelmed, anxious, scared, uncertain, confused, panicked, and defeated. These are the raw, visceral feelings of families grappling with the unknown, facing a future that suddenly feels very different.

On the other, the classic "blind men and the elephant" analogy depicts the MEDICAL COMMUNITY'S perspective. Each specialist, armed with their specific expertise, interprets symptoms through their own lens – "It's a snake," "It's a spear," "It's a wall," "It's a rope," "It's a tree," "It's a fan." While each observation is valid within its specialty, the challenge lies in synthesizing these individual pieces into a holistic understanding of the "elephant" – the complex neuromuscular condition.

This visual serves as a critical reminder:
👩🏻‍⚕️ 👨🏻‍⚕️ For Healthcare Professionals: empathy and effective communication are paramount. Understanding the emotional turmoil parents face is just as crucial as understanding the clinical signs. Connecting the dots between different specialities to present a unified picture can significantly alleviate parental distress.

🙍🏻‍♀️ 🙍🏻 For Parents & Patient Advocates: your experience and observations are invaluable. Don't hesitate to share your full story and advocate for a comprehensive assessment that considers all aspects of your child's health.

👨‍👨‍👧‍👧 👨‍👩‍👦 👨‍👦‍👦 👩‍👧 For the Neuromuscular Community (Researchers, Pharma, Support Groups): We must continue to foster collaboration, improve diagnostic pathways, and provide integrated support systems that address both the medical complexities and the emotional toll of these conditions.

Let's work together to ensure that no family feels lost in translation when facing a neuromuscular diagnosis. How can we better bridge this gap?

22/09/2025

We're ready to start the first webinar of the series Navigating NMDs: Your CoMPaSS to Care, are you? Are you comfortable?

See you in ten minutes!

16/09/2025

💻 Join us for our first webinar: 𝗡𝗠𝗗 𝗖𝗮𝗿𝗲: 𝗕𝗿𝗶𝗱𝗴𝗶𝗻𝗴 𝗧𝗼𝗱𝗮𝘆 𝗮𝗻𝗱 𝗧𝗼𝗺𝗼𝗿𝗿𝗼𝘄 𝗳𝗼𝗿 𝗬𝗼𝘂

🍾 Don't miss our inaugural webinar on 𝗦𝗲𝗽𝘁𝗲𝗺𝗯𝗲𝗿 𝟮𝟮, 𝟮𝟬𝟮𝟱, 𝗮𝘁 𝟱:𝟬𝟬 𝗣𝗠 𝗖𝗘𝗧.

We're tackling the pressing issue of NMD care, focusing on filling critical information gaps and highlighting the latest innovations.

This webinar is for anyone who wants to learn more about neuromuscular disorders (NMDs) and the importance of a human-centered approach to patient care. We believe that bridging the gap between current knowledge and future advancements is essential for improving the lives of those affected by these conditions.

We're thrilled to have two leading experts share their insights:

👩🏻‍⚕️ 𝗥𝗼𝘀𝘀𝗲𝗹𝗹𝗮 𝗧𝘂𝗽𝗹𝗲𝗿, 𝗰𝗼𝗼𝗿𝗱𝗶𝗻𝗮𝘁𝗼𝗿 𝗼𝗳 𝘁𝗵𝗲 𝗖𝗼𝗠𝗣𝗮𝗦𝗦-𝗡𝗠𝗗 𝗽𝗿𝗼𝗷𝗲𝗰𝘁, will discuss the challenges of a lack of awareness and understanding surrounding NMDs. Her research focuses on integrating different types of data to better understand the onset and progression of these diseases.

👨🏻‍⚕️ 𝗙𝗶𝗹𝗶𝗽𝗽𝗼 𝗠𝗮𝗿𝗶𝗮 𝗦𝗮𝗻𝘁𝗼𝗿𝗲𝗹𝗹𝗶, 𝗮 𝗰𝗹𝗶𝗻𝗶𝗰𝗮𝗹 𝗻𝗲𝘂𝗿𝗼𝗹𝗼𝗴𝗶𝘀𝘁 𝗮𝗻𝗱 𝗻𝗲𝘂𝗿𝗼𝗴𝗲𝗻𝗲𝘁𝗶𝗰𝘀 𝗲𝘅𝗽𝗲𝗿𝘁, will bring his extensive experience in caring for patients with various neuromuscular disorders.

Join us as we explore new approaches and a human-centered philosophy in NMD care.

REGISTER HERE:
EN: https://eventipro.it/you-compass-to-care-free-webinar-autumn-2025/?language=en

ITA: https://eventipro.it/you-compass-to-care-free-webinar-autumn-2025/?language=it

DE: https://eventipro.it/you-compass-to-care-free-webinar-autumn-2025/?language=de

Registration is free and grants you access to all four live webinars. Can’t make it live? Register anyway to receive the recordings.

We look forward to seeing you there!

FONDAZIONE TELETHON UILDM Unione Italiana Lotta alla Distrofia Muscolare - Direzione Nazionale Folkhälsan Unimore - Università degli Studi di Modena e Reggio Emilia Ern-Rnd European Reference Network for Rare Neurological Diseases ACMT Rete per la Charcot Marie Tooth Ascape-h2020 Horizon Europe FINCONS GROUP Christopher Castellini - Illusionista della Mente Ludwig-Maximilians-Universität München EnRico Robustelli Capuano