September 26, 2026 at 7:33 AM
👥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
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
January 23, 2025 at 1:18 PM
👥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
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
Thank you #EURORDIS for the 2025 Black Pearl Scientific Award. It is so gratifying to witness the vigour exhibited by the rare disease community. Congratulations EURORDIS for your commitment to providing support to those affected by a rare disease. #VASCAPA #HEVAS VASCERN, @vascern.bsky.social ERN
February 25, 2025 at 11:00 AM
Thank you #EURORDIS for the 2025 Black Pearl Scientific Award. It is so gratifying to witness the vigour exhibited by the rare disease community. Congratulations EURORDIS for your commitment to providing support to those affected by a rare disease. #VASCAPA #HEVAS VASCERN, @vascern.bsky.social ERN
What is VASCERN & how do we improve rare vascular disease care? 💙
This #ResearchHighlight explores our network’s impact. While we've expanded, our mission stays the same: better care for rare vascular diseases.
📖 Read more: bit.ly/3CJuiDL
#RareDiseases #Rarediseaseawareness
This #ResearchHighlight explores our network’s impact. While we've expanded, our mission stays the same: better care for rare vascular diseases.
📖 Read more: bit.ly/3CJuiDL
#RareDiseases #Rarediseaseawareness
February 17, 2025 at 1:04 PM
What is VASCERN & how do we improve rare vascular disease care? 💙
This #ResearchHighlight explores our network’s impact. While we've expanded, our mission stays the same: better care for rare vascular diseases.
📖 Read more: bit.ly/3CJuiDL
#RareDiseases #Rarediseaseawareness
This #ResearchHighlight explores our network’s impact. While we've expanded, our mission stays the same: better care for rare vascular diseases.
📖 Read more: bit.ly/3CJuiDL
#RareDiseases #Rarediseaseawareness
❄️That’s a wrap on the VASCERN Vascular Anomalies Working Group winter meeting!
Over two days, experts & patient advocates worked on #guidelines, #registries & patient pathways to improve care for vascular anomalies.
🎥Celebrating with the traditional boomerang!
#RareDiseases
Over two days, experts & patient advocates worked on #guidelines, #registries & patient pathways to improve care for vascular anomalies.
🎥Celebrating with the traditional boomerang!
#RareDiseases
February 11, 2025 at 11:48 AM
❄️That’s a wrap on the VASCERN Vascular Anomalies Working Group winter meeting!
Over two days, experts & patient advocates worked on #guidelines, #registries & patient pathways to improve care for vascular anomalies.
🎥Celebrating with the traditional boomerang!
#RareDiseases
Over two days, experts & patient advocates worked on #guidelines, #registries & patient pathways to improve care for vascular anomalies.
🎥Celebrating with the traditional boomerang!
#RareDiseases
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
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
February 12, 2026 at 2:36 PM
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
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
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
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
October 9, 2025 at 8:41 AM
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
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
I hope these pathways will help both junior and senior physicians to manage these patients , and to those affected by these vascular diseases to obtain faster a definite diagnosis. #vascapa #vascern #cmtc #hevas #vascern #capillary #malformation #evbo #navbo #issva #leducq #theralymph
March 5, 2025 at 7:13 AM
I hope these pathways will help both junior and senior physicians to manage these patients , and to those affected by these vascular diseases to obtain faster a definite diagnosis. #vascapa #vascern #cmtc #hevas #vascern #capillary #malformation #evbo #navbo #issva #leducq #theralymph
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
🔹 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
September 15, 2025 at 4:20 PM
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
🔹 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
The rare disease community is gathering in Warsaw for the high-level conference “Towards an EU Action Plan on Rare Diseases”, followed by “Bridging Research & Care for Patients” on April 11.
VASCERN is represented by Prof. Jondeau & Julie Hallac.
🎥 bit.ly/3Ed11SA
#RareDisease #EUHealth
VASCERN is represented by Prof. Jondeau & Julie Hallac.
🎥 bit.ly/3Ed11SA
#RareDisease #EUHealth
April 10, 2025 at 4:05 PM
The rare disease community is gathering in Warsaw for the high-level conference “Towards an EU Action Plan on Rare Diseases”, followed by “Bridging Research & Care for Patients” on April 11.
VASCERN is represented by Prof. Jondeau & Julie Hallac.
🎥 bit.ly/3Ed11SA
#RareDisease #EUHealth
VASCERN is represented by Prof. Jondeau & Julie Hallac.
🎥 bit.ly/3Ed11SA
#RareDisease #EUHealth
It was great to be able to add a small human bit to the story. # VASCAPA #vascern #cmtc #Hevas #vascapa #evbo #navbo
We hope these findings bring us closer to better treatments for this challenging condition. #vascularbiology #PIK3CA #venousmalformation
Huge thanks to our fantastic collaborators Michael Potente, René Hägerling, Friedrich Kapp, @mvikkula.bsky.social, Laurence Boon, @ruibenedito.bsky.social
Huge thanks to our fantastic collaborators Michael Potente, René Hägerling, Friedrich Kapp, @mvikkula.bsky.social, Laurence Boon, @ruibenedito.bsky.social
May 25, 2025 at 6:01 PM
The great #ISSVA debates meeting 2025 meeting has come to an end. Nothing compares to F2F discussions and networking. Looking forward to the ISSVA World Congress 2026 in #Philadelphia #vascapa #hevas #CMTC #VASCERN #LE&RN #ESL #ISL #vascular #lymphatic #syndrome #hemangioma #theranostic #repurposing
April 26, 2025 at 11:00 AM
The great #ISSVA debates meeting 2025 meeting has come to an end. Nothing compares to F2F discussions and networking. Looking forward to the ISSVA World Congress 2026 in #Philadelphia #vascapa #hevas #CMTC #VASCERN #LE&RN #ESL #ISL #vascular #lymphatic #syndrome #hemangioma #theranostic #repurposing
Congratulations Emmanuel on showing how #sirolimus treatment can be adapted. #patients with #slow-#flow #vascular #malformations have #symptom reduction even with #intermittent dosing. A big step forward in the #multimodal management of VAs. #VASCERN #VASCAPA #CMTC #HEVAS #ISSVA #EVDays #Lymph
December 17, 2025 at 7:25 AM
Congratulations Emmanuel on showing how #sirolimus treatment can be adapted. #patients with #slow-#flow #vascular #malformations have #symptom reduction even with #intermittent dosing. A big step forward in the #multimodal management of VAs. #VASCERN #VASCAPA #CMTC #HEVAS #ISSVA #EVDays #Lymph
Our latest review, 'Current and Emerging Pharmacotherapies for Vascular Malformations', is online. First 50 can download the PDF for free via the link. Thank you, Emmanuel Seront, for putting it together! #VASCAPA #HEVAS #CMTC #VASCERN #RADIOORG #EURORDIS #EVBO
www.tandfonline.com/eprint/QGPRV...
www.tandfonline.com/eprint/QGPRV...
March 18, 2026 at 3:06 PM
💜 It’s #RareDiseaseDay!
300 million people live with a rare disease. Today, we honour their strength, raise awareness, & advocate for better care.
🎙️ Hear our members share one word for Rare Disease Day➡️ youtu.be/iV-jgYSyOEQ
Which word speaks to you? Reply below! ⬇️
300 million people live with a rare disease. Today, we honour their strength, raise awareness, & advocate for better care.
🎙️ Hear our members share one word for Rare Disease Day➡️ youtu.be/iV-jgYSyOEQ
Which word speaks to you? Reply below! ⬇️
Rare Disease Day 2025
YouTube video by VASCERN ERN
youtu.be
February 28, 2025 at 11:59 AM
💜 It’s #RareDiseaseDay!
300 million people live with a rare disease. Today, we honour their strength, raise awareness, & advocate for better care.
🎙️ Hear our members share one word for Rare Disease Day➡️ youtu.be/iV-jgYSyOEQ
Which word speaks to you? Reply below! ⬇️
300 million people live with a rare disease. Today, we honour their strength, raise awareness, & advocate for better care.
🎙️ Hear our members share one word for Rare Disease Day➡️ youtu.be/iV-jgYSyOEQ
Which word speaks to you? Reply below! ⬇️
Great 2 days at #French Society of #Lymphology in Toulouse on lymphatic malformations, lymphoedema and lipedema. Illustrative presentations, pertinent questions and collegial discussions. Humbling to be part of the faculty. #vascapa #hevas #CMTC #Welbio #eshg #revamp #VASCERN #eurordis #lymph #LM
December 5, 2025 at 5:17 PM
📢 VASCERN Summer School 2025 is officially underway! On February 7, we kicked off with an exciting online session, welcoming #medical students & researchers eager to expand their knowledge in rare vascular diseases.
What’s next? Find out👉 bit.ly/40Z3ibc
#RareDisease #summerschool2025
What’s next? Find out👉 bit.ly/40Z3ibc
#RareDisease #summerschool2025
February 13, 2025 at 2:03 PM
📢 VASCERN Summer School 2025 is officially underway! On February 7, we kicked off with an exciting online session, welcoming #medical students & researchers eager to expand their knowledge in rare vascular diseases.
What’s next? Find out👉 bit.ly/40Z3ibc
#RareDisease #summerschool2025
What’s next? Find out👉 bit.ly/40Z3ibc
#RareDisease #summerschool2025
Meet 8 year old Alejandro who has lymphoedema in his right leg. This #WorldLymphoedemaDay, his story shows that life doesn’t stop with lymphoedema. 💙
Watch his inspiring testimony 👇
youtu.be/Il6EGQ-xrU4?...
#LymphoedemaAwareness #RareDisease #PatientStory
Watch his inspiring testimony 👇
youtu.be/Il6EGQ-xrU4?...
#LymphoedemaAwareness #RareDisease #PatientStory
Living and playing with Lymphoedema: Alejandro's Story
YouTube video by VASCERN ERN
youtu.be
March 6, 2025 at 1:59 PM
Meet 8 year old Alejandro who has lymphoedema in his right leg. This #WorldLymphoedemaDay, his story shows that life doesn’t stop with lymphoedema. 💙
Watch his inspiring testimony 👇
youtu.be/Il6EGQ-xrU4?...
#LymphoedemaAwareness #RareDisease #PatientStory
Watch his inspiring testimony 👇
youtu.be/Il6EGQ-xrU4?...
#LymphoedemaAwareness #RareDisease #PatientStory
Great WCPD with several sessions on vascular anomalies. Launch of the Vascular Anomaly book with M. Cordisco, D. Teplisky and N. Torres as Editors. Happy to meet again the Garrahan Hospital VA-team and many other colleagues, to make progress the care of VAs. #VASCAPA, #HEVAS, #CMTC, #VASCERN, #LE&RN
April 10, 2025 at 6:19 PM
Great WCPD with several sessions on vascular anomalies. Launch of the Vascular Anomaly book with M. Cordisco, D. Teplisky and N. Torres as Editors. Happy to meet again the Garrahan Hospital VA-team and many other colleagues, to make progress the care of VAs. #VASCAPA, #HEVAS, #CMTC, #VASCERN, #LE&RN
Can better patient care start with learning from others?
Dr. Bosshardt joined the #VASCERN Exchange Programme at @vallhebroncampus.bsky.social to see how experts in Barcelona integrate #research into #Marfansyndrome care.
Here’s what he learned: bit.ly/4kKkevc
#RareDiseases
Dr. Bosshardt joined the #VASCERN Exchange Programme at @vallhebroncampus.bsky.social to see how experts in Barcelona integrate #research into #Marfansyndrome care.
Here’s what he learned: bit.ly/4kKkevc
#RareDiseases
March 18, 2025 at 8:07 AM
Can better patient care start with learning from others?
Dr. Bosshardt joined the #VASCERN Exchange Programme at @vallhebroncampus.bsky.social to see how experts in Barcelona integrate #research into #Marfansyndrome care.
Here’s what he learned: bit.ly/4kKkevc
#RareDiseases
Dr. Bosshardt joined the #VASCERN Exchange Programme at @vallhebroncampus.bsky.social to see how experts in Barcelona integrate #research into #Marfansyndrome care.
Here’s what he learned: bit.ly/4kKkevc
#RareDiseases
🔬 New research across 20 European Reference Networks, including VASCERN, highlights gaps in #pregnancy & #family planning care for people with #rarediseases.
Lack of clear guidance leaves many patients without the specialised care they need.
Read more: bit.ly/3FzgjBj
#ResearchHighlight
Lack of clear guidance leaves many patients without the specialised care they need.
Read more: bit.ly/3FzgjBj
#ResearchHighlight
March 17, 2025 at 11:01 AM
🔬 New research across 20 European Reference Networks, including VASCERN, highlights gaps in #pregnancy & #family planning care for people with #rarediseases.
Lack of clear guidance leaves many patients without the specialised care they need.
Read more: bit.ly/3FzgjBj
#ResearchHighlight
Lack of clear guidance leaves many patients without the specialised care they need.
Read more: bit.ly/3FzgjBj
#ResearchHighlight
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...
Read how their paths crossed
➡️ vascern.eu/news/vascern...
September 1, 2026 at 10:27 AM
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...
Read how their paths crossed
➡️ vascern.eu/news/vascern...