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February was all about shining a light on rare diseases, and we've got some insightful updates you won’t want to miss! Here's a quick look at what's inside this month's VASCERN newsletter:
✱ Featured Content: The European Commission's public consultation on rare diseases is open until March 30th. Your input can shape the future of rare disease policy in Europe!
✱ News Highlights: Key updates and research papers.
✱ Upcoming Events: Don't miss important dates for upcoming VASCERN and European rare disease events.
✱ Educational Resources: Explore our resources tailored for healthcare professionals and patients.
✱ Join the Conversation: Follow us on Bluesky! |
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EU Consultation on Rare Diseases |
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The European Parliament’s Committee on Public Health (SANT) has launched a critical public consultation to better understand rare diseases and shape future EU policies. This consultation is open until March 31st, and your insights are essential for influencing rare disease policy and the future funding of the European Reference Networks (ERNs). Contribute anonymously and easily in your preferred language. |
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Living with Lymphoedema: Alejandro's Story |
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In honour of World Lymphoedema Day, meet Alejandro, an inspiring 8-year-old living actively with lymphoedema. Watch his uplifting story on our YouTube channel, as Alejandro shares his passion for football, basketball, and friendship. His journey highlights the importance of positivity, support, and community understanding. |
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World Lymphoedema Day 2025 |
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March 6th marked World Lymphoedema Day, celebrating 10 years of global advocacy and awareness. This important occasion highlights the ongoing efforts to educate, reduce stigma, and improve the quality of life for those affected. Explore VASCERN’s initiatives, including educational webinars, practical patient pathways, factsheets, and informative videos designed to support lymphoedema patients and healthcare providers. |
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New Publication on Patient Pathway for Diagnosing and Managing Capillary Malformations |
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The VASCERN-VASCA Working Group published a new paper in the Journal of Vascular Anomalies detailing the diagnostic and management pathway for capillary malformations (CMs), developed collaboratively by experts from 14 leading European centers. This patient pathway assists healthcare providers in diagnosing and managing these conditions effectively. |
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VASCERN Marks Rare Disease Day 2025 |
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For Rare Disease Day 2025, VASCERN engaged in several actions including a joint action with all European Reference Networks (ERNs) to share the powerful message: “Rare Patients, Rare Experts, Real Outcomes.” Watch our multilingual video featuring heartfelt messages from VASCERN doctors and patient advocates. |
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France Launches Fourth National Rare Diseases Plan |
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France has launched the Fourth National Rare Diseases Plan (PNMR4) to improve care for over 3 million people living with rare diseases. The plan focuses on expanding access to specialised care, speeding up diagnosis through advanced genetic testing, and boosting research and innovation to develop new treatments. |
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Highlights of the VASCERN Vascular Anomalies (VASCA) Working Group Winter Meeting 2025 |
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On February 10-11, the VASCA Winter Meeting 2025 brought together healthcare professionals, and patient advocates to enhance collaboration on vascular anomalies care. Key discussions included refining patient pathways, expanding data registries, and empowering patient advocacy. |
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European Commission Releases New Factsheets on Rare Diseases and European Reference Networks |
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Ahead of Rare Disease Day 2025, the European Commission released three key documents highlighting its dedication to improving rare disease care across Europe. These publications cover the role of European Reference Networks (ERNs), patient stories, advancements in data sharing, orphan medicines, and enhanced support for patients. |
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VASCERN Members Honoured for Outstanding Contributions |
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Professors Miikka Vikkula and Bart Loeys were honoured for their exceptional contributions to rare vascular disease care. Professor Vikkula received the EURORDIS Scientific Award 2024, while Professor Loeys was awarded a Doctor Honoris Causa by the University of Barcelona for his work on Marfan and Loeys-Dietz syndromes. Their achievements highlight the impact of dedicated research and patient advocacy. |
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VASCERN Summer School 2025 Kicks Off |
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The VASCERN Summer School 2025 officially launched on February 7th with an engaging online introductory session. The session included a warm welcome from the VASCERN Coordination Team and interactive icebreaker activities, creating a friendly and collaborative atmosphere. Upcoming online sessions from February to May will cover key topics, leading to the onsite phase in September with hands-on training and workshops. |
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New Webinar Recording Available Online |
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The latest VASCERN webinar, presented by Dr. Michael Frank, is now available on YouTube. It covers how varicose veins develop in Vascular Ehlers-Danlos Syndrome (vEDS), the risks they pose, and safe management options. This expert session also includes a Q&A addressing practical concerns. |
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VASCERN HTAD Spring Meeting 2025 |
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The VASCERN Heritable Thoracic Aortic Diseases (HTAD) Working Group will gather on March 28th in Brussels for their annual spring meeting, bringing together experts and patient advocates to discuss key developments, new projects, and research in HTAD.
Note: This meeting is exclusively for VASCERN members. |
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VASCERN MSA Spring Meeting 2025 |
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On April 2nd, 2025, the Medium-Sized Arteries Working Group will hold its Annual Spring Meeting at Erasmus University Medical Center. This event will provide a platform for experts to collaborate on projects aimed at improving vEDS management.
Note: This meeting is exclusively for VASCERN members. |
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European Symposium on Vascular Ehlers-Danlos Syndrome (vEDS) |
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Hosted by the Erasmus University Medical Center and financed by VASCERN, this symposium will take place on April 1st, 2025, focusing on advancements in diagnosis, treatment, and care for vEDS. Key topics include genetic understanding, prevention strategies, treatment options, and pregnancy considerations for vEDS patients. |
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VASCERN Days 2025 |
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Mark your calendars! VASCERN Days 2025 will take place on October 9–10, 2025, bringing together experts, patient advocates, and healthcare professionals from across Europe. Stay tuned for program details as we prepare to advance care for rare vascular diseases together. |
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Upcoming European & International Events |
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International Krupp Symposium on Juvenile Stroke |
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Join the International Krupp Symposium on Juvenile Stroke on March 14-15, 2025, in Essen, Germany. The event will cover the causes, diagnosis, and treatment of juvenile stroke, with expert-led workshops and discussions. Admission is free, but registration is required by February 15, 2025. |
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2nd ERN ReCONNET International Congress on Rare Connective Tissue Diseases |
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Join us at the 2nd ERN ReCONNET International Congress in Prague, April 9-11, 2025, focusing on rare connective tissue diseases. The event will cover key topics like diagnosis, clinical management, and quality of care, with a patient-centered approach. |
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European Human Genetics Conference 2025 |
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From May 24-27, 2025, the European Human Genetics Conference will bring together experts, researchers, and students to share groundbreaking insights in human genetics. Participate in workshops, lectures, and networking sessions, either in-person or virtually. Abstract submission deadline January 30, 2025. |
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ESC Congress 2025 |
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Join the largest cardiology event, ESC Congress 2025, from August 29 to September 1 in Madrid. Explore cutting-edge science, connect globally, and shape the future of cardiovascular care. Abstract submission deadline March 1, 2025. |
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This month, we’re highlighting resources on primary lymphoedema. |
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Do’s and Don’ts Factsheets |
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Access practical expert recommendations for managing primary lymphoedema, including skincare, compression therapy, and activities to avoid. These easy-to-follow factsheets are designed to support both patients and healthcare providers |
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Patient Pathways |
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Understand the step-by-step pathway to diagnosing and managing primary lymphoedema. This pathway helps healthcare professionals make informed decisions. |
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Pills of Knowledge Videos |
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Watch short, expert-led videos covering essential aspects of lymphoedema management, from compression techniques to patient testimonials. |
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Webinars |
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Watch our latest expert-led webinars to learn about effective management strategies for primary lymphoedema. These sessions cover diagnosis, treatment options, and answers to common patient questions. |
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VASCERN is on Bluesky! |
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We are leaving X by the end of March. To stay connected with us for the latest updates, expert insights, and community discussions on rare vascular diseases, follow us on Bluesky: @vascern.bsky.social |
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Don't miss out on the latest discussions, achievements, and updates on our social media platforms. Follow VASCERN on social media to stay engaged with our vibrant community. |
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VASCERN, European Reference Network for Rare Multisystemic Vascular Diseases
46 Rue Henri Huchard, 75018 Paris, France
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