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VASCERN | European Reference Network

@vascern.bsky.social

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Advancing the diagnosis, treatment, and care of patients with rare multisystemic vascular diseases across Europe. 🔬 Evidence-based guidelines | 🌍 Cross-border collaboration | 📚 Education 📌 Visit us: www.vascern.eu

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VASCERN | European Reference Network @vascern.bsky.social · Jan 23

👥30M people in Europe live with a #raredisease, yet many face delayed diagnoses and limited treatments.

We’re VASCERN, a European network of experts & patient advocates advancing care for rare multisystemic vascular diseases. Follow us for research updates, resources & more!

👉 www.vascern.eu

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VASCERN | European Reference Network @vascern.bsky.social · 4h

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

VASCERN | European Reference Network @vascern.bsky.social · 2d

Big week ahead! Our annual VASCERN Days 2025 kicks off in Paris this Thursday and Friday.

Looking forward to seeing so many of our clinicians, ePAGs, and partners as we keep pushing forward together. 🫶

#VASCERNDays2025 #RareDisease #ERNs #CrossBorderCare

VASCERN | European Reference Network @vascern.bsky.social · 13d

Yesterday we joined FAVA-Multi at Bichat Hospital to share who we are and raise awareness of rare vascular diseases.

Raising awareness is not limited to rare disease day, it happens all year, especially within the healthcare system where patients are treated.

Filière FAVA-Multi @fava-multi.bsky.social · 13d

🏥Aujourd'hui, FAVA-Multi et @vascern.bsky.social tiennent un stand à @hopitalbichat.bsky.social pour se présenter à travers des activités ludiques autour des maladies vasculaires rares
🤝L'objectif : mieux se faire connaître du personnel hospitalier qui travaille à proximité des équipes des filières

VASCERN | European Reference Network @vascern.bsky.social · 13d

The VASCERN Summer School 2025 may be over, but the lessons stay with our participants. For Elis, a medical student from Estonia, the highlight was an interactive CADASIL session that offered real clinical insight.

📢 Applications for the 2026 edition are open until October 27, 2025 👉 bit.ly/42MKOMT

VASCERN | European Reference Network @vascern.bsky.social · 18d

✨ Last day at the #VASCERN Summer School 2025: no slides, no case discussions — just role plays, reflections, and practice in what matters most for patient care: communication.

📢 Apply now for 2026 👉 vascern.eu/training-and...

VASCERN | European Reference Network @vascern.bsky.social · 23d

Day 1 of the #VASCERN Summer School 2025 wrapped up

🔹 HTAD: genetics, diagnosis, treatment, daily life & patient perspectives
🔹 MSA: Vascular EDS & arterial dissection

Talks, case discussions, coffee breaks and a networking event to come 🌍

#RareDiseases #MedicalEducation

VASCERN | European Reference Network @vascern.bsky.social · 24d

🙌 It begins! #VASCERN Summer School 2025 kicks off today in Paris.

From packing goodies to welcoming a new cohort, the week ahead is all about rare vascular diseases, learning, and connection 💡

👉 Applications are now open for the 2026 cohort: vascern.eu/training-and...

VASCERN | European Reference Network @vascern.bsky.social · Sep 3

From patient involvement to cross-border collaboration, this is how we make rare care stronger.

💾 Save this for later, 🔁 share it with your network, and explore more at www.vascern.eu

#rarediseases

VASCERN | European Reference Network @vascern.bsky.social · Sep 3

VASCERN = Europe’s Reference Network for rare vascular diseases

But what does that actually mean?
Here are 5 facts about who we are, why we exist & how we work.

Swipe through the images ⬇️

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VASCERN | European Reference Network @vascern.bsky.social · Aug 5

☀️We're pressing pause for the summer. We're taking a short break from social media until September with fresh updates, resources, and news from our network.

Take this time to catch up on our resources at vascern.eu/resources/

Wishing you a restful and healthy #summerbreak!

VASCERN | European Reference Network @vascern.bsky.social · Jul 14

Last Friday, our Neurovascular Diseases WG met in Essen 🇩🇪 for a collaborative summer meeting!

Key moments:
✅ Moyamoya e-learning module validated 🎉
✅ Scientific session + hands-on workshop
✅ Case discussions

Thanks to our hosts & all attendees!

#RareDiseases #CADASIL #Moyamoya #CrossBorderCare

VASCERN | European Reference Network @vascern.bsky.social · Jun 27

A full day in Brussels led to big progress.

Our PPL group finalised
✔️ Clinical Outcome Measures Document (children & adults)
✔️ Do’s & Don’ts factsheets updated
✔️ Key issues discussed: compression in infants, surgery, transition, and more

📝 New resources coming soon!
#Lymphoedema #RareDisease

VASCERN | European Reference Network @vascern.bsky.social · Jun 23

Happening today at 17:00 CEST!

Join Prof. Hugues Chabriat for a live webinar on #CADASIL — a rare #neurological disease often misdiagnosed. Learn how to spot key clinical signs & improve #diagnosis.

🎯 For #Neurology & stroke HCPs
👉 Register: bit.ly/4dMtprX

VASCERN | European Reference Network @vascern.bsky.social · Jun 23

Today is World HHT Day 🩸

HHT is a rare disease that affects 1 in 5,000 people. It can cause nosebleeds, internal bleeding, and serious health issues if left undiagnosed.

We’ve created simple, helpful tools to download and share: bit.ly/4liqauL

#WorldHHTDay #RareDisease #SeeBeyond

A graphic titled “Not Just a Nosebleed” highlights Hereditary Haemorrhagic Telangiectasia (HHT), a rare vascular disease that affects 1 in 5,000 people worldwide. The word “nosebleed” features a red blood droplet as the letter “O”. On the left, an icon shows 1 in 2 people living with HHT have AVMs in their lungs or liver. On the right, an icon shows 1 in 5 people living with HHT may have gastrointestinal bleeding. The graphic includes the logos of the European Reference Network, VASCERN, and the European Union, along with the date “HHT Awareness Day – June 23”.

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VASCERN | European Reference Network @vascern.bsky.social · Jun 19

🚨 Only 4 days to go! Could that “MS” diagnosis actually be #CADASIL?

Join Prof. Chabriat to explore how MRI clues, progression, & family history can support accurate diagnosis.
🗓️ 23 June | 17:00 CEST
🔗 Register: ec.europa.eu/eusurvey/run...

#Neurology #RareDiseases #Webinar

VASCERN | European Reference Network @vascern.bsky.social · Jun 16

🧠 #CADASIL is the most common genetic small vessel disease, first identified 40+ years ago. Still no treatment. Still under-recognised.

Join Prof. Hugues Chabriat for a webinar on its clinical spectrum.
📅 23 June | 🕔 17:00 CEST
Register here: bit.ly/4dMtprX
#CADASIL #RareDiseases #Stroke #Neurology

Reposted by VASCERN | European Reference Network

ERDERA @erdera.bsky.social · Jun 16

🔔 Join us on 23 June at 17:00 CEST for the launch of the #Together4RD Toolkit – a key resource to boost ERN-industry collaboration in #RareDisease research.
🔹 Practical tools
🔹 Real-world cases
🔹 Expert speakers
👉 Register: loom.ly/9TZyyX4
#ERDERA

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VASCERN | European Reference Network @vascern.bsky.social · Jun 4

🗣️“Even though a cure doesn’t exist, I believe one day HHT will be a disease to remember not one to fear.”

At the recent Based on Evidence #European meeting, experts came together to share evidence-based ways to improve #HHT care across #Europe.

Read more ➡️ bit.ly/3HmPMbr

Key Takeaways From The BEE Meeting 2025 On Hereditary Haemorrhagic Telangiectasia | VASCERN

Explore the key takeaways from the BEE Meeting 2025 on Hereditary Haemorrhagic Telangiectasia, with expert insights and evidence-based updates.

bit.ly

VASCERN | European Reference Network @vascern.bsky.social · May 22

🩸 Our HHT Working Group just wrapped up its Spring Meeting!

Key highlights from the day:
🔹 Clinical case discussions
🔹 Do’s & Don’ts for #pregnancy in HHT
🔹 Registry updates
🔹 #Ultrasound course in development
🔹 Preparation for next BEE Meeting

Thank you to all who participated!

VASCERN | European Reference Network @vascern.bsky.social · May 19

📢 New resource alert! A gene compendia summarising key genes involved in heritable thoracic aortic diseases like #Marfan & #LoeysDietz syndromes.

For #geneticists, #cardiologists, #researchers & more.
Explore it here ➡️ bit.ly/4kp2YL5

#RareDiseases #Genetics

VASCERN | European Reference Network @vascern.bsky.social · May 16

🔴 Today is REDS4VEDS Day 2025, marking 10 years of awareness for vascular Ehlers-Danlos syndrome (vEDS).

Many are still diagnosed only after a medical emergency. We’ve created tools to support vEDS care.

Watch: youtu.be/j6XQJIicJCU?...
More info: bit.ly/4kmcvlV

#REDS4VEDS #vEDS #EDS #RareDisease

VASCERN | European Reference Network @vascern.bsky.social · May 12

Up to 75% of people with Moyamoya angiopathy suffer from disabling headaches often without proper diagnosis or care.

Our recent webinar on #headache in Moyamoya shares crucial insights on diagnosis & treatment.

🎥Watch here: bit.ly/3S0tCOo

#Moyamoya #RareDiseases

Reposted by VASCERN | European Reference Network

Miikka Vikkula @mvikkula.bsky.social · May 9

If you are interested in the clinical aspects of lymphatic diseases, don't miss the 30th ISL World Congress of Lymphology. #lymph @vascern.bsky.social
#issva #theralymph

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VASCERN | European Reference Network @vascern.bsky.social · May 9

Too many HHT patients still face delayed #diagnosis & inconsistent care.

On 23 May in Crema, Italy, the BEE Meeting brings clinicians, researchers & patients together for a full day of evidence-based talks & cross-border #learning.

Register here to join us 👉 bit.ly/432kbCV

#RareDiseases

VASCERN | European Reference Network @vascern.bsky.social · May 5

This is part of our mission to improve rare vascular disease care across Europe.

➡️ Download the tool: bit.ly/3MysT4n

bit.ly