iiinova — where your digital self keeps evolving

VASCERN | European Reference Network @vascern.bsky.social · 04/10/2026

In Barcelona for Science in Spain 2026, organised by The Marfan Foundation. Four days on Marfan, Loeys-Dietz, vascular Ehlers-Danlos syndrome and related conditions. Interviews with experts from our network to follow. marfan.org/scienceinspain

marfan.org

The Marfan Foundation Presents Science in Spain - Marfan Foundation

The Marfan Foundation is collaborating with the European Society of Cardiology's Peripheral Artery and Aortic Disease Working Group, along with local hosts, Drs. Arturo Evangelista and Gisela Teixidó ...

010

VASCERN | European Reference Network @vascern.bsky.social · 01/09/2026

It's a match! Egi met Dr Rifino at our Summer School in Paris. Two months later, she was training with his team in Milan, the first VASCERN Alumni placement. Read how their paths crossed ➡️ vascern.eu/news/vascern...

010

VASCERN | European Reference Network @vascern.bsky.social · 11/08/2026

Our Paediatric and Primary Lymphoedema (PPL) Working Group has published ➡️ an e-learning course on primary lymphoedema and ➡️ an updated Do's and Don'ts factsheet covering the everyday questions patients and doctors ask most. Read more and access both resources: vascern.eu/news/new-ppl...

010

VASCERN | European Reference Network @vascern.bsky.social · 18/06/2026

Our HHT Working Group finds bevacizumab benefits the majority of people with severe HHT complications, in real-world data from five European countries. Published in the British Journal of Clinical Pharmacology. Read here: bpspubs.onlinelibrary.wiley.com/doi/10.1002/...

012

VASCERN | European Reference Network @vascern.bsky.social · 17/06/2026

🎉 Dr. Robert Damstra, Chair of our PPL Working Group, has been appointed Officer in the Order of Orange-Nassau, one of the Netherlands' most prestigious civil honours. A well-deserved recognition of his remarkable career in lymphoedema care. Read the full story: vascern.eu/news/robert-...

000

Reposted by VASCERN | European Reference Network

ERDERA @erdera.bsky.social · 17/06/2026

Have you registered yet? 👀 🚀 ERDERA Clinical Trial Call 2026 launches 1 July 🧬 Supporting multinational early‑phase trials in rare diseases Join our webinar (6 July, 15:00–17:00) for guidance + Q&A with experts. 🔗 Find out more and register at: loom.ly/Zey54D0 #ERDERA #RareDiseases

011

VASCERN | European Reference Network @vascern.bsky.social · 11/06/2026

ECRD 2026 took place on 3–4 June and several people connected to the VASCERN community were among those who attended and contributed including one who walked away with a Poster Award for the GEMS-App (www.101gems.be). Wonderful to see so many familiar faces👏 #ECRD2026 #RareDiseases

010

VASCERN | European Reference Network @vascern.bsky.social · 28/05/2026

For parents of children with connective tissue disorders, finding clear information about surgery is hard. Three specialist surgeons will answer your questions on 9 June at 17:30 CEST. 👉 ec.europa.eu/eusurvey/run... #RareDisease #ConnectiveTissueDisorders #VASCERN

010

VASCERN | European Reference Network @vascern.bsky.social · 22/05/2026

Two days in Luxembourg at the ERN Coordinators Meeting. Our coordinator raised key questions on non-EU access to CPMS, expertise on new #diseases, and fairer ERN representation. And we wish Donata Meroni a warm farewell as she retires from DG SANTE in June.

011

VASCERN | European Reference Network @vascern.bsky.social · 21/05/2026

How do you tell someone they have a rare vascular disease? This new video from our #Psychology Working Group has practical tips for clinicians on communicating a rare diagnosis because how you say it matters as much as what you say. 🎬 Watch here: youtu.be/rH7PwLypkOE?... #RareDisease

030

Reposted by VASCERN | European Reference Network

The Ehlers-Danlos Society @ehlers-danlos.com · 21/05/2026

The call for abstracts is now open for the 'Precision Medicine for Genetically Defined Ehlers-Danlos Syndromes' event. The hybrid event will take place September 3-4, in Ghent, Belgium, and livestreamed globally. The deadline for abstract submissions is Sunday, June 7th: shorturl.at/LFKel

Promotional graphic from The Ehlers-Danlos Society encouraging abstract submissions for a conference titled “Precision Medicine for Genetically Defined Ehlers-Danlos Syndromes: Genetic and Allelic Variation in Decision-Making About Diagnosis, Natural History, and Treatment.” The design features purple and blue DNA-themed graphics on a light gray background. Large text reads “Submit Your Abstract.” A highlighted box states the submission deadline: “Sunday, June 7, 2026 at 11:59 PM ET (US and Canada).

181

Reposted by VASCERN | European Reference Network

ERDERA @erdera.bsky.social · 21/05/2026

🚀 New ERDERA webinar series launching 28 May 2026! Advancing #RareDiseases Diagnostics will explore the full journey of the Diagnostic Research Workstream, from governance & data to innovation and results. 👉 Find out more and register: loom.ly/mH7fD24

111

VASCERN | European Reference Network @vascern.bsky.social · 15/05/2026

Today is REDS4VEDS Day. 🔴 Visibility matters. But for people living with vEDS, visibility without accurate information is not enough. Four facts from our expert Q&A series. Watch here: 🎥 Part 1: youtu.be/lGJs15Clsnc 🎥 Part 2: www.youtube.com/watch?v=YJdf... #REDS4VEDS #vEDS #EDSAwarenessMonth

021

VASCERN | European Reference Network @vascern.bsky.social · 14/05/2026

Doctors once investigated Francesco's family for possible abuse because of his severe bruising. The bruising was actually a symptom of undiagnosed #vEDS. Four hospitalisations in six months. And finally, a diagnosis that changed everything. Read Alessandra's story👉 vascern.eu/network/pati...

010

VASCERN | European Reference Network @vascern.bsky.social · 13/05/2026

Most people have never heard of vascular Ehlers-Danlos syndrome (vEDS). This infographic breaks down the key facts about vEDS including what causes it and what it affects. Looking to learn more about vEDS, start here ➡️ vascern.eu/group/medium...

031

VASCERN | European Reference Network @vascern.bsky.social · 11/05/2026

This week, we are dedicating every post to Vascular Ehlers-Danlos Syndrome. May is #EDSAwarenessMonth and this Friday is #REDS4VEDS Day. We'll be posting every day this week: the science, a patient story, the resources, and the clinicians doing the work. Follow along!

031

VASCERN | European Reference Network @vascern.bsky.social · 27/04/2026

Our Medium-Sized Arteries Diseases Working Group has issued a scientific statement recommending irbesartan added to celiprolol for eligible adult patients, based on the ARCADE trial. Trial did not include children or teenagers. 👉 Full statement: vascern.eu/group/medium...

010

VASCERN | European Reference Network @vascern.bsky.social · 17/04/2026

We're at the XI ESVM Congress in Lausanne this week 🇨🇭 Our Project Manager and Education & Scientific Officer are at the VASCERN stand and this Saturday we join the plenary: "When genes don't tell the whole story" with four leading experts from our network. Come find us at the congress! #ESVM2026

010

Reposted by VASCERN | European Reference Network

ERDERA @erdera.bsky.social · 17/04/2026

📣 Two online courses are offering direct interaction with specialists in rare disease research. 📅 7 April–15 May: Health Data Ethics & Regulatory Frameworks 📅 27 April–12 June: From Lab to Clinic: Translational Research 🔗 Find out more and register: loom.ly/oPGm0FY #ERDERA

033

VASCERN | European Reference Network @vascern.bsky.social · 13/04/2026

Neurology resident Egi Mali has just completed a two months placement at Fondazione IRCCS Istituto Neurologico Carlo Besta in Milan through our Summer School Alumni Programme. Stay tuned to learn about her experience. Find out more about the programme ➡️ vascern.eu/training-and...

010

Reposted by VASCERN | European Reference Network

Filière FAVA-Multi @fava-multi.bsky.social · 02/04/2026

🚴 Quel sport pratiquer quand on a une maladie vasculaire rare ? Retrouvez la réponse pour le syndrome de Marfan, les MAV du système nerveux central, le lymphœdème primaire et le syndrome d'Ehlers-Danlos vasculaire. Les réponses en vidéo sont disponibles sur YouTube ➡️ youtube.com/playlist?lis...

011

VASCERN | European Reference Network @vascern.bsky.social · 04/03/2026

For years, patients with lymphoedema were told not to exercise. The evidence says otherwise. 5 key takeaways from our recent webinar on physical activity and primary lymphoedema. Watch the full recording: youtu.be/MQxDx1m57ic?...

022

Reposted by VASCERN | European Reference Network

JARDIN Joint Action @jardinjointaction.bsky.social · 03/03/2026

🦓✨ Over the past weeks, we have shared the stories of people living with a rare disease. 💜 Thank you to everyone who so generously shared their personal stories for #RareDiseaseDay. 🌐 Explore them and share them with your networks 📚 jardin-ern.eu/european-reference-ne…

022

VASCERN | European Reference Network @vascern.bsky.social · 03/03/2026

⏳ 3 days left! The deadline for ECRD 2026 Poster Abstract Submissions is this Friday, 6 March. Submissions are open to patient groups, academics, healthcare professionals, and all other interested parties. 📩 Submit now → www.rare-diseases.eu/posters/ #ECRD2026 #RareDiseases

010

VASCERN | European Reference Network @vascern.bsky.social · 28/02/2026

Caroline (Infantile haemangioma): "My advice to doctors is to listen to caregivers who deal with children with special needs on a daily basis."

110

VASCERN | European Reference Network @vascern.bsky.social · 28/02/2026

Francesco's mother (vEDS): "Knowledge is hope and reassurance that things can change and care can improve."

100

VASCERN | European Reference Network @vascern.bsky.social · 28/02/2026

Marta (Primary lymphoedema): "My illness is not a limitation—it's a companion that constantly teaches me to adapt."

100

VASCERN | European Reference Network @vascern.bsky.social · 28/02/2026

Dara (HHT): "People are walking around with these ticking time bombs because they don't know about it." 90% of people with HHT go undiagnosed.

100

VASCERN | European Reference Network @vascern.bsky.social · 28/02/2026

Carmen (Marfan syndrome): "I became not just a mother, but also a nurse, a researcher, and sometimes a warrior."

100

VASCERN | European Reference Network @vascern.bsky.social · 28/02/2026

Elisabeth (CADASIL): "I felt like I was holding a secret about my husband: I knew something about him that he didn't know."

100

VASCERN | European Reference Network @vascern.bsky.social · 28/02/2026

It's Rare Disease Day 💜 Six people from our VASCERN community shared their personal stories with rare vascular diseases. A thread 🧵

110

Reposted by VASCERN | European Reference Network

Filière FAVA-Multi @fava-multi.bsky.social · 27/02/2026

🏥 À l’occasion de la Journée Internationale des Maladies Rares, FAVA-Multi et Vascern ont tenu un stand à l’hôpital Bichat pour se présenter et proposer des animations ludiques autour des maladies vasculaires rares. Cet événement a permis de gagner en visibilité auprès des équipes de l'hôpital 🤝

011

VASCERN | European Reference Network @vascern.bsky.social · 19/02/2026

Prof Nele Devoogdt has spent over a decade helping lymphoedema patients stay active. She founded the lymphoedema centre at UZ Leuven and she's presenting at our online webinar on 2 March. 📅 17:30 CET | Live Q&A included Register here: ec.europa.eu/eusurvey/run...

010

VASCERN | European Reference Network @vascern.bsky.social · 13/02/2026

Today, we officially launched the VASCERN Summer School 2026! Young clinicians & researchers from across Europe joined the first online session of our ERASMUS+ blended programme on rare multisystemic vascular diseases. Welcome to the 2026 cohort.

010

VASCERN | European Reference Network @vascern.bsky.social · 12/02/2026

Can you exercise with primary lymphoedema? What's safe and what needs caution? VASCERN webinar with 3 experts sharing practical guidance + live Q&A. 📅 2 March | 17:30 CET Register: ec.europa.eu/eusurvey/run... #RareDiseases #Lymphoedema #VASCERN

020

VASCERN | European Reference Network @vascern.bsky.social · 12/01/2026

📣 Upcoming free virtual event | Spanish-language The Marfan Foundation will host its 5th Spanish-Language Summit 📅 Saturday, 24 January 2026 ⏰ 16:00–18:30 (CET) 💻 Online 🌍 Sessions are 100% in Spanish with experts from Europe, Latin America & the US. Register here: vascern.eu/events/marfa...

021

Reposted by VASCERN | European Reference Network

Rare Diseases International (RDI) @rarediseasesint.bsky.social · 07/01/2026

📢 REMINDER: Join RDI on 15 January 2026 from 13:30 - 14:45 CET (updated time) for a public webinar where we will discuss the current status of the implementation of the WHA Resolution on Rare Diseases, as we approach the WHO EB meeting taking place in February. 📲 Registration Link: lnkd.in/exF6U8z4

031

Reposted by VASCERN | European Reference Network

ERN eUROGEN @erneurogen.bsky.social · 08/01/2026

Join @erneurogen.bsky.social & ERNs across Europe for a crucial webinar: 🛠️ Medical Device Shortages & Regulatory Constraints 🗓️ Wed 21 Jan @ 18:00 CET 🎙️ With clinicians, regulators & industry experts 🔗 Register: bit.ly/eUROGEN21Jan26 #EUfunded #HealthUnion #RareDisease #ERNs

131

VASCERN | European Reference Network @vascern.bsky.social · 07/01/2026

🎉 Happy New Year from all of us at VASCERN! New year, same focus at VASCERN: supporting clinicians, patients, and families through shared expertise and trusted resources across Europe. Thank you for following and engaging with our work. We wish you a healthy and hopeful 2026.

000

VASCERN | European Reference Network @vascern.bsky.social · 19/12/2025

As 2025 comes to a close, a moment to recognise what makes VASCERN’s work possible. Across Europe, patients & healthcare professionals helped turn expertise into practical resources, shared learning, and cross-border collaboration. Thank you for being part of this work. We continue in 2026.

020

VASCERN | European Reference Network @vascern.bsky.social · 16/12/2025

Most clinicians see few KHE cases. VASCERN’s new pathways provide structured guidance on diagnosis, treatment, Kasabach-Merritt management, and follow-up to support more consistent care across Europe. Read more ➡️ vascern.eu/news/kaposif...

030

VASCERN | European Reference Network @vascern.bsky.social · 27/11/2025

The first EU report on the ERNs shows real progress: 📈 160% increase in new patients referred to ERN centres 🌍 1,600+ expert units connected across Europe 💻 2,100+ virtual consults improving access to specialist care Read more: vascern.eu/news/ern-mon... #rarediseases

020

VASCERN | European Reference Network @vascern.bsky.social · 26/11/2025

🧠 Join our ESO–VASCERN webinar on practical tools and registries supporting care for CADASIL & Moyamoya Angiopathy with Dominique Hervé & Nicola Rifino 📅 11 Dec | 16:00 CET 🔗 Register: us02web.zoom.us/webinar/regi... #Neurovascular #RareDisease #CADASIL #Moyamoya #MedEd

010

Reposted by VASCERN | European Reference Network

JARDIN Joint Action @jardinjointaction.bsky.social · 25/11/2025

🩺 🥼 How does integrating the #ERNs into National Healthcare Systems support healthcare professionals? By engaging with ERNs, they can: 💡 Access virtual consultations 🎓 Join continuous training 📊 Contribute to research, guidelines & registries 🤝 Enhance care coordination & collaboration

121

VASCERN | European Reference Network @vascern.bsky.social · 25/11/2025

Is a clearer way to understand CADASIL? The new NOTCH3-SVD staging system outlines nine stages based on MRI + clinical features. Our NEUROVASC group helped turn it into an accessible explainer video. 🎥 Watch more here: youtu.be/T5hgroNM7zo?... #CADASIL #NOTCH3 #RareDisease

010

VASCERN | European Reference Network @vascern.bsky.social · 30/10/2025

Not every conversation in care is easy especially when the diagnosis is rare. This new toolkit, co-created by patients, psychologist and clinicians in VASCERN, offers real tools for better, more human #healthcommunication. Access the toolkit ➡️ vascern.eu/news/rare-di... #rarediseases

010

VASCERN | European Reference Network @vascern.bsky.social · 28/10/2025

Missed the deadline? You have another chance to apply! Applications for the VASCERN Summer School 2026 now close Nov 11. Apply today → vascern.eu/training-and... #VASCERNSummerSchool #RareDiseases

010

VASCERN | European Reference Network @vascern.bsky.social · 23/10/2025

Textbooks teach theory. Our summer school brings it to life, connecting experts and patients with students eager to learn about rare vascular diseases. Applications are open until Oct 27 → vascern.eu/training-and... #VASCERNSummerSchool #RareDiseases #marfan #ehlersdanlos #lymphoedema

010

VASCERN | European Reference Network @vascern.bsky.social · 09/10/2025

VASCERN Days 2025 kicks off in Paris 🎉 Morning sessions covered coordination, communication, CPMS 2.0, ERASMUS+ training, and new rules and extension. Now on to the Transversal WG talks on Pregnancy, Registries, and Psychology. #VASCERNDays2025

040