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From awareness campaigns to global recognition, May was a month of progress across the rare disease community. In this edition, we’re sharing key highlights from VASCERN, new tools and webinars, and what’s ahead, including our CADASIL session on 23 June. |
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New Gene Compendia for Heritable Thoracic Aortic Diseases (HTAD) |
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Developed by the HTAD Working Group, this compendia offers an up-to-date overview of genes associated with heritable thoracic aortic diseases — helping support accurate diagnosis, informed counselling, and targeted care. |
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Based on Evidence European (BEE) Meeting 2025 |
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The BEE Meeting brought together HHT experts and patients for a powerful day focused on evidence-based care. With discussions on genetic testing, AVMs, pregnancy, anaemia, and quality of life, the meeting highlighted how structured collaboration and patient voices are shaping the future of HHT treatment across Europe. |
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Inside the HHT Spring Meeting 2025 |
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Held in Crema, the HHT Working Group Spring Meeting brought together experts and patient representatives for a productive day focused on clinical coordination, case-based collaboration, and educational planning. Highlights included new progress on the HHT registry, the approval of a pregnancy Do’s and Don’ts factsheet, and discussions on upcoming research and outreach. |
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VASCERN Summer School Spotlighted at ERN Coordinators Meeting |
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At the recent ERN Coordinators Meeting in Brussels, we presented the VASCERN Summer School as a model for rare disease education. With its focus on cross-border learning and multidisciplinary collaboration, the programme is gaining recognition across Europe. |
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10 Years of REDS4VEDS advocacy |
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REDS4VEDS marked its 10th anniversary this year, and once again the community came together to raise awareness of vascular Ehlers-Danlos syndrome. VASCERN joined in by raising awareness and sharing resources. |
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Webinar Replay: Empowering you to live better with Vascular Ehlers-Danlos Syndrome (vEDS) |
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This recent webinar from the MSA Working Group brings together expert insights and patient voices to help people with vEDS navigate daily life and emergency care with more confidence. The session covers practical tools like Do’s & Don’ts, Pills of Knowledge, emergency planning tips, and what’s coming next — including multilingual resources and the upcoming vEDS emergency card. |
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Webinar Replay: Headache in Patients with Moyamoya Angiopathy |
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If you missed our April webinar, the replay is now available. In this session, experts explored the often-overlooked symptom of headache in Moyamoya angiopathy, with insights into diagnosis, management, and quality of life. |
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Rare Disease News from Across Europe |
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€30,000 grants to support rare disease networking events |
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ERDERA has launched a new scheme offering up to €30,000 to support rare disease and rare cancer workshops, hybrid meetings, or conferences. Open to researchers, clinicians, and patient advocates from at least three ERDERA countries, with a focus on inclusion from underrepresented EU regions. The first deadline is 7 October 2025. |
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Help shape the future of rare disease research |
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ERDERA is inviting patient organisations to share their experience in publicly funded research through a new EU-wide survey. This is a chance to help make research more inclusive, transparent, and impactful. Responses will shape future calls for funding, and all data will be handled confidentially. |
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Rare diseases officially declared a public health priority worldwide |
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For the first time, rare diseases have been formally recognised as a global health priority by all WHO Member States. This landmark resolution urges countries to improve diagnosis, care, and inclusion, and offers rare disease advocates a powerful tool to push for change at national levels. |
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Spotlight on HHT Awareness Day and Resources |
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HHT Awareness Day is coming up on 23 June, and it's an important moment to shine a light on Hereditary Haemorrhagic Telangiectasia — a condition that still goes under-recognised in many settings.
At VASCERN, we remain committed to supporting both patients and professionals through clear, accessible resources. In the lead-up to this year’s campaign, we invite you to explore our current tools and keep an eye out for new ones coming later this June. |
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Do’s and Don’ts Factsheets |
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Quick, expert-backed recommendations on what to do and avoid in daily life and medical situations with HHT. |
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Pills of Knowledge Videos |
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Short, easy-to-understand videos on key HHT topics created by experts and patient advocates. |
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HHT Patient Pathway |
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A step-by-step guide for healthcare providers to ensure proper diagnosis and management of HHT patients. |
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Webinar Replays |
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Learn from past webinars featuring HHT specialists and patient voices across Europe. |
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Spectrum of Clinical Manifestations in CADASIL |
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23 June 2025 – 17:00 CEST
Join us for an educational webinar on CADASIL, hosted by our NEUROVASC Working Group. Prof. Hugues Chabriat will walk us through the diverse ways this condition presents from recurrent strokes and migraines to cognitive symptoms.
For: healthcare professionals (neurologists, stroke specialists, GPs) and interested patients/families. |
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VASCERN Paediatric & Primary Lymphoedema Working Group Spring Meeting 2025 |
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The PPL Working Group will meet in Brussels on 23 June to exchange updates on ongoing projects, discuss clinical cases, and plan future initiatives.
Note: This meeting is exclusively for VASCERN members. |
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VASCERN Neurovascular Diseases Working Group Summer Meeting 2025 |
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Taking place in Essen, Germany on 11 July, the NEUROVASC Working Group will come together for case-based discussions, knowledge sharing, and collaborative planning for upcoming work on CADASIL and Moyamoya Angiopathy.
Note: This meeting is exclusively for VASCERN members. |
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Thanks for reading this edition of the VASCERN newsletter!
If you haven’t yet, come follow us on Bluesky. 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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