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Welcome to the April edition of VASCERN's newsletter! This month, we bring you the opportunity to register for our exclusive webinar that delves into the critical topic of HHT (Hereditary Hemorrhagic Telangiectasia) and pregnancy. Plus, a roundup of last month's achievements and educational resources in different EU languages you need to check out. |
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The VASCERN PPL working group patient pathway for primary and paediatric lymphoedema |
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The members of the VASCERN PPL WG have worked together to produce this opinion statement reflecting strategies on how to approach patients with primary and paediatric lymphoedema. The objective of this patient pathway is to improve patient care by reducing the time to diagnosis, define the best management and follow-up strategies and avoid overuse of resources. |
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New Resources on Marfan Syndrome, Familial TAAD, and Genetic Testing in HTAD |
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Upcoming Webinar: Patient Involvement in Guidelines Development |
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Replay Available: High-level Conference on the Future EU Health Union |
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Join Our Upcoming Webinar: HHT and Pregnancy – Register Now! |
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The Impact of EU Pharma Reform on Rare Diseases |
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World Lymphedema Day 2024: A Call to Action for Increased Awareness and Support |
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CADASIL France |
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This month, we shine a light on CADASIL France, a dedicated organization uniting patients and families affected by CADASIL disease. With a mission rooted in offering support and information to patients and their loved ones, CADASIL France also supports clinical and fundamental research into this rare genetic condition affecting small cerebral arteries and leading to neurological symptoms. |
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Educational Resources: French Edition |
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Parcours Patient: Maladie de Rendu-Osler |
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Explore our "Parcours Patient: Maladie de Rendu-Osler" resource, designed to guide healthcare professionals through the comprehensive, multidisciplinary care required from initial suspicion to long-term management of Rendu-Osler also known as Hereditary Hemorrhagic Telangiectasia. A crucial tool for ensuring accurate and cohesive patient care. |
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Le Sport et le Syndrome de Marfan |
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This Pill of Knowledge (PoK) talks about how physical activity is beneficial for Marfan syndrome patients and the types of sports that are adapted for these patients and which to avoid. |
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Les complications gastro-intestinales dans le syndrome d’Ehlers-Danlos vasculaire (SEDv) |
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This Pill of knowledge (PoK) subtitled in French gives a thorough overview of the gastrointestinal complications associated with vascular Ehlers-Danlos Syndrome (vEDS). |
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Organigramme de l’érysipèle pour les patients atteints de lymphoedème |
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This is a cellulitis/erysipelas flowchart for lymphedema. It includes signs and symptoms, treatments, and prevention of cellulitis. |
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Le traitement des malformations lymphatiques |
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This Pill of Knowledge (PoK) video subtitled in French presents the various treatment options for lymphatic malformations. |
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Webinar: HHT and Pregnancy | 17 April 2024 |
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The VASCERN HHT (Hereditary Hemorrhagic Telangiectasia) Working Group is excited to host a webinar on HHT and Pregnancy scheduled for April 17th at 5 PM CEST. This session is designed not just to inform but to empower patients, engage caregivers, and update healthcare professionals on the latest information. |
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VASCERN MSA Working Group Spring Meeting 2024 | 18 April 2024 |
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The VASCERN MSA (Medium-Sized Arteries) Working Group is excited to invite its members to the upcoming Spring Meeting scheduled for April 18th, 2024 in the beautiful city of Paris. |
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VASCERN HTAD Working Group Spring Meeting 2024 | 19 April 2024 |
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The VASCERN HTAD (Heritable Thoracic Aortic Diseases) Working Group is delighted to invite its members to the Spring Meeting, scheduled to take place in Paris on April 19th, 2024. |
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Upcoming European & International Events |
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ESC Preventive Cardiology 2024 Congress | 25 - 27 April 2024 |
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Join the ESC Preventive Cardiology 2024 Congress from April 25-27 in Athens, the pinnacle event for the latest in heart health and preventive strategies, hosted by the European Association of Preventive Cardiology (EAPC). This years's congress is themed Cardiovascular Risk: The Heart and Beyond. |
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15th ALA Scientific Conference | 1 - 5 May 2024 |
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Join the 15th ALA Scientific Conference, set to take place at the Adelaide Convention Centre, Australia from May 1-5, 2024. This prestigious event promises to be a cornerstone for professionals dedicated to advancing lymphatic health, featuring groundbreaking research and clinical advancements in the management of lymphedema. |
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ISSVA World Congress 2024 | 7 - 10 May 2024 |
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Join a landmark event in the field of vascular anomalies, the ISSVA World Congress 2024: The Latest in Vascular Anomalies, set against the vibrant backdrop of Madrid, Spain, from May 7-10, 2024. This congress is hosted by the International Society for the Study of Vascular Anomalies (ISSVA) and represents a pivotal gathering for professionals dedicated to advancing research, treatment, and collaboration in this specialized field. |
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57th Annual Meeting of the Association for European Paediatric and Congenital Cardiology | 8 - 11 May 2024 |
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Join the 57th Annual Meeting of the Association for European Paediatric and Congenital Cardiology (AEPC), taking place from May 8-11, 2024, in Porto, Portugal. This event promises to be an enriching experience for health professionals, researchers, and all those dedicated to the advancements in paediatric and congenital cardiology. |
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12th European Conference on Rare Diseases | 15 - 16 May 2024 |
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The European Conference on Rare Diseases (ECRD) is the largest, patient-led, rare disease policy-shaping event held in Europe. By bringing together people with rare diseases and patient advocates, policy makers, healthcare industry representatives, clinicians, regulators and Member State representatives, EURORDIS harnesses the power of this extensive network to shape goal-driven rare disease policies of the future. |
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32nd European Conference on General Thoracic Surgery | 26 - 28 May 2024 |
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Attend the 32nd European Conference on General Thoracic Surgery (ESTS), set to take place from 26 – 28 May 2024 in Barcelona, Spain. The 32nd ESTS Annual Meeting will feature a dynamic blend of oral and video presentations, covering a wide spectrum of thoracic surgery and related disciplines. |
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EJP RD Final Conference | 27 - 28 May 2024 |
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The EJP RD Final Conference is scheduled to take place from May 27th to May 28th, 2024 in Bari, Italy, this conference is set to bring together leading experts, professionals, and enthusiasts from around the world. The hybrid event is open in person only to invited people. The event is open for all online. |
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International Vascular Biology Meeting 2024 | 2 - 5 July 2024 |
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The IVBM2024 Vascular Biology meeting will take place in Amsterdam, the Netherlands and bring together investigators from all fields of vascular biology for the exchange of new concepts and discussions of outstanding questions in the field. Early Bird ticket until 15 April. |
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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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