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Welcome to the May edition of the VASCERN newsletter! This month, take the opportunity to contribute to rare disease research and join us in raising awareness for vEDS during EDS Awareness Month. A discount code to attend the European Conference on Rare Diseases virtually is also waiting for you! |
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Epilepsy with faint capillary malformation or reticulated telangiectasia associated with mosaic AKT3 pathogenic variants |
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This study underscores the importance of searching for additional signs and symptoms to guide the diagnostic workup, especially in cases with atypical vascular malformations. In addition, it strongly emphasizes the significance of genotype-phenotype correlation studies in guiding clinicians' informed decision-making regarding patient care. |
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Share4Rare Webinar on 2024 Research Project Call for Rare Disease Research |
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European Parliament adopts the European Health Data Space (EHDS) |
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Highlights from the VASCERN Heritable Thoracic Aortic Diseases (HTAD) Working Group Spring Meeting 2024 |
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Summary of the VASCERN Medium Sized Arteries Working Group Spring Meeting 2024 |
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Watch Now: HHT and Pregnancy Webinar Replay Available on YouTube |
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Ghent University research team receives prestigious Everest Award for Marfan syndrome research |
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PIK3CA Related Conditions (PROS) Research Round Tables |
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Call for Applications: Improving Understanding of Disease Mechanisms of PTEN Harmartoma Tumour Syndrome (PHTS) |
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Ehlers-Danlos Syndromes (EDS) Awareness Month |
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The month of May is dedicated to raising awareness of Ehlers-Danlos syndromes, including vascular Ehlers-Danlos syndrome (vEDS), a rare vascular disease. We have a group dedicated to this condition and many resources to help you learn and stay informed. |
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Coming soon: New Edition of the VASCA Magazine |
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The 2nd edition of the VASCA magazine is coming soon! We are very excited to share it with you. The magazine is a collaborative effort between medical professionals and members of the European Patient Advocacy Group (ePAG) within the Vascular Anomalies Working Group (VASCA WG) of VASCERN. Keep an eye out on our social media channels to know when it is LIVE! |
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Educational Resources: Spanish Edition |
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Fichas Informativas de VASCERN con Recomendaciones para Pacientes con Telangiectasia Hemorrágica Hereditaria |
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Explore our do's & don'ts factsheets that alert medical professionals to the unique needs of rare disease patients in frequent situations. It has expert recommondations on what to do and what not to do during these situations. This factsheet is for Hereditary Hemorrhagic Telangiectasia. |
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¿Cómo se controla la aorta? |
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This pill of knowledge video subtitled in Spanish talks about the anatomy of the aorta and the imaging techniques used to visualize the aorta. |
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Pruebas genéticas para el linfedema primario: la perspectiva de una madre |
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This pill of knowledge video subtitled in Spanish talks about the importance of genetic testing and receiving proper genetic counselling when primary lymphedema is diagnosed in a family and how reaching out to a patient association can be of great support. |
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Síndrome de Klippel-Trenaunay (KTS) |
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This Pill of Knowledge (PoK) video subtitled in Spanish explains the clinical characteristics of this rare disease in a simple way. |
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VASCERN PPL Working Group Spring Meeting 2024 | 23 May 2024 |
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The VASCERN PPL (Pediatric and Primary Lymphedema) Working Group is excited to invite its members to the upcoming Spring Meeting scheduled for May 23rd, 2024 in Amsterdam, the Netherlands. |
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VASCERN NEUROVASC Working Group Spring Meeting 2024 | 24 May 2024 |
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The VASCERN NEUROVASC (Neurovascular Diseases) Working Group is delighted to invite its members to the Spring Meeting, scheduled to take place in Leiden, Netherlands on May 24th, 2024. |
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Upcoming European & International Events |
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12th European Conference on Rare Diseases | 15 - 16 May 2024 |
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Connect with other patients, advocates, and experts to share experiences and build a support network at the upcoming ECRD on 15 & 16 May 2024! Members of our network get 15% off with the promo code: ECRD24_15%_Partners. |
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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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PIK3CA Related Conditions (PROS) Research Roundtable | 30 May 2024 |
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The CLOVES Syndrome Community Research Roundtable meets every other month and focuses on knowledge exchange, feedback on ongoing projects, sharing work and research in progress. This roundtable is for: Basic and pre-clinical researchers in academia and industry, Graduate students, CLOVES Syndrome Community funded research grantees, and Patient advocacy organization leaders |
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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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VASCERN Days 2024 | 24 - 25 October 2024 |
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The annual VASCERN Days 2024 will take place in Paris, France. This annual event welcomes healthcare professionals from VASCERN Healthcare Provider (HCP) Full Members and Affiliated Partner centers, patient advocates from the VASCERN ePAG (European Patient Advocacy Group), and other key stakeholders for two days of engaging discussions and knowledge exchange. |
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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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