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Welcome to the March edition of VASCERN's newsletter, where change is in the air and new beginnings are on the horizon! As the season transitions, so does our commitment to making strides in the field of rare vascular diseases. This month, we're excited to share with you the blossoming developments in research and patient care, and valuable resources. |
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The VASCERN-VASCA Working Group Diagnostic and Management Pathways for Venous Malformations |
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The Vascular Anomalies working group (VASCA) of the European Reference Network (ERN) for Rare Multisystemic Vascular Diseases (VASCERN) produced a Diagnostic and Management Pathway based on a group of expert interaction to share their experience for the diagnosis and management of these slow-flow vascular lesions. The VASCERN-VASCA diagnostic and management vascular malformation-pathways should help decision-making for physicians suspecting a vascular anomaly. |
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International Women’s Day 2024: Spotlight on the women of VASCERN |
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Rare Diseases in the EU: Joint Action shaping the future of ERNs |
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VASCERN Neurovascular Diseases Working Group Secures EJP RD Grant for CADANHIS Project |
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European Joint Programme Launches Innovative Dashboard to Showcase Rare Disease Research Projects |
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The Role of European Reference Networks in Enhancing Access to Diagnosis and Treatment for Rare Diseases: An Interview with Holm Graessner. |
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European Commissioner for Health and Food Safety Speaks on Rare Disease Day |
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International Children’s Camp on Lymphedema 3rd Edition |
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Apply for the VASCERN Exchange Program |
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Recap of the Vascular Anomalies Working Group (VASCA WG) Winter Meeting 2024 |
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Vascular Anomalies Working Group (VASCA-WG) February Case Discussions |
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Association Vivre Mieux le Lymphoedème |
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Association Vivre Mieux le Lymphoedème (AVML) is a patient organisation in France dedicated to raising awareness about lymphedema as a disability and its impact on daily life. They aim to improve the management of this condition by informing patients, therapists, and public authorities, thus fostering a better understanding and support for those affected by Lymphedema. |
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Marfan Syndrome - Diagnosis by Prof Julie De Backer |
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This Pill of Knowledge (PoK) gives an overview of the diagnosis of Marfan syndrome with its main clinical manifestations and diagnostic criteria described. The genetics of this rare disease are also briefly outlined in a clear and comprehensible manner. Subtitles available in German, French, Italian, Spanish, Dutch and Hungarian. |
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An Overview of Hereditary Haemorrhagic Telangiectasia (HHT) by Prof Claire Shovlin |
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This Pill of Knowledge (PoK) is an introduction to HHT by explaining its main clinical features (and their frequency) in addition to the genetics and aetiology of this rare disease. |
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Vascular Ehlers-Danlos syndrome: Introduction and new criteria |
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This video gives an introduction to vascular Ehlers-Danlos syndrome (vEDS) and presents the major and minor clinical criteria for vEDS from the 2017 International Classification for all types of Ehlers-Danlos syndromes published in the American Journal of Human Genetics. |
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The PIK3CA gene and related vascular malformations |
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This Pill of Knowledge (PoK) video explains how an error in the PIK3CA gene can be the cause of congenital vascular malformations, such as lymphatic and venous malformations, which can be isolated or occur in overgrowth syndromes. Diagnosis and treatment are also briefly covered. |
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Lymphedema from a teenager's perspective |
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This Pill of Knowledge features a conversation in Italian between two teenagers, Laura and Sven, who ask each other basic questions about living with lymphedema. Subtitles in English, Danish, Dutch, Finnish, French, German, Italian, Norwegian, Portuguese, Spanish, Bulgarian and Swedish. |
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18 March 2024 |
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VASCERN PPL-WG Monthly Meeting |
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20 March 2024 |
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VASCERN VASCA-WG Monthly Meeting |
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21 March 2024 |
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VASCERN NEUROVASC-WG Monthly Meeting |
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22 March 2024 |
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VASCERN HHT-WG Monthly Meeting |
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25 March 2024 |
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VASCERN HTAD-WG Monthly Meeting |
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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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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 cultural capital of 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. |
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VASCERN Webinar: HHT and Pregnancy | 17 April 2024 |
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Join our upcoming webinar on HHT and Pregnancy. Get expert insights and guidance on managing HHT during pregnancy, ensuring a safer and informed journey for expectant mothers. Keep an eye out on our social media channels for more details on how to register. |
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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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