Marfan Europe Network

11/10/2026

You can now also follow us on Instagram! 🚀🎉

08/10/2026

📍 Science in Barcelona 2026

One of the greatest strengths of the Marfan and HTAD community is the way patients, researchers, clinicians and advocates come together to learn from one another and drive progress forward.

A memorable moment during the conference was the presentation of the Innovation Award to Tal Golesworthy. Earlier this year, at the M.E.N. Conference in Luxembourg, Tal shared his remarkable journey with us and explained how his background as an engineer helped shape the development of PEARS.

That made it even more special to see him receive this well-deserved recognition in Barcelona. The warm applause and standing ovation reflected the appreciation felt by so many patients, families and professionals whose lives have been touched by his work.

Representing the patient voice at the conference were VASCERN HTAD ePAG advocates Elena, Carmen, Romain and Ida, together with Angelita, Netta and Ludivine.

In the link below, shared by VASCERN: The ERN on rare multisystemic vascular diseases, Prof. Bart Loeys reflects on one of the key themes emerging from Science in Barcelona. His message is both simple and powerful: care works best when it is tailored to the individual. Even when people share the same diagnosis, they can have very different experiences, risks and needs. As research advances, factors such as s*x differences, disease stage and genetic modifiers are helping to pave the way towards more personalized care.
https://www.facebook.com/share/r/1Gm1Gi3E4w/

Note: This video contains general information and does not replace advice from your own healthcare team.

Our sincere thanks to The Marfan Foundation for bringing the international HTAD community together at Science in Barcelona, and to VASCERN: The ERN on rare multisystemic vascular diseases for continuing to connect research, clinical expertise and the patient perspective. Together, they help drive the progress that gives so many patients and families hope for the future.

07/10/2026

📍 Science in Barcelona

Pictured from left to right: Elena, Carmen, Romain and Ida, the ePAG Patient Advocates from the VASCERN HTAD working group (Heritable Thoracic Aortic Disease).

Over the past few days, the M.E.N. and VASCERN HTAD ePAG Advocates have been exploring the future of Marfan syndrome, Loeys-Dietz syndrome, vascular Ehlers-Danlos syndrome and related conditions at the Marfan Foundation Science in Barcelona Conference.

A key theme throughout the conference was the growing role of precision medicine, where a person's specific genetic variant will increasingly help guide decisions on monitoring, imaging, medication, surgery and rehabilitation. This personalized approach holds great promise for improving outcomes and quality of life for people living with HTAD conditions.

One of the highlights was a presentation by Prof. Bart Loeys, who shared exciting findings on the potential protective modifier gene KLF15. This discovery emerged from his work with the 101 Genomes Project and the first part of the GEMS cohort study (50 participants). These findings may provide important new insights into why disease severity can differ so much between individuals carrying similar genetic variants.

🔗 In the link below, Prof. Loeys explains these promising developments and what they could mean for the future of personalized care for people with HTAD conditions.
https://youtu.be/tHyBcahBjXU?is=5czVgcmzMBxtS8YC

We are deeply grateful to all researchers, clinicians, patient advocates and study participants whose dedication continues to advance knowledge and improve the lives of patients and their families.

02/10/2026

A great initiative highlighting the potential of AI and research for the future of Marfan syndrome care. 🧬❤️

We’re happy to share this update from 101 Genomes about Professor Tom Lenaerts’ presentation at the AI in Medicine Symposium in Belgium.

On October 1st, Professor Tom Lenaerts addressed the topic “The Promise of AI in Medicine… and Our Own Ambitions to …

20/09/2026

And just like that, our four-day M.E.N. meeting in Luxembourg has come to an end! 🇪🇺❤️

It has been four inspiring and informative days, bringing together people from across Europe to share knowledge, experiences and ideas around Marfan and Loeys-Dietz syndrome.

We had the opportunity to learn about a wide range of topics, including PEARS, holistic health and the balance between body, mind and emotions, as well as developments in genomics and research. These sessions gave us new insights and plenty of valuable information to take home and share within our own countries and organisations. 📚✨

But the M.E.N. meeting is about much more than presentations. It is also about meeting old friends, making new connections, exchanging experiences and supporting each other across borders. There was plenty of time for good conversations, laughter and enjoying each other's company as well. ❤️

A very special thank you to our colleagues from the Luxembourg Marfan Association for hosting us and for all the time, energy and care they put into making these days so enjoyable and successful. 🇱🇺❤️

We are leaving Luxembourg with new knowledge, new ideas, renewed energy and many wonderful memories.

Thank you to everyone who was part of these four days. Together, we can continue to strengthen collaboration and support for people and families affected by Marfan and Loeys-Dietz syndrome across Europe.

And although it may still be a little while away, we already look forward to meeting again in Denmark in 2028! 🇩🇰❤️

Until then — together we can! 🤝✨

18/09/2026

Marfan Europe Network 🇪🇺❤️ M.E.N.

We are currently in Luxembourg for the Marfan Europe Network meeting, where people from 12 different countries are coming together for four days to share knowledge, experiences, and support.

The days are filled with interesting and informative lectures about Marfan and related disorders, providing us with lots of valuable information and new insights.

It is also wonderful to see old friends and familiar faces again, while meeting new people along the way. Being together with others who share a similar journey creates a special sense of connection and community.

Let’s see what these four days have in store for us. ❤️🌍

14/09/2026

We are sharing this important message from the Marfan Trust during Aortic Dissection Awareness Week.

For people living with Marfan syndrome, Loeys-Dietz syndrome and related connective tissue disorders, awareness of aortic dissection is vital. Knowing the signs and acting quickly can save lives.

See the signs. Save a life. 🩵

Please read, share and help us raise awareness across Europe.

See the Signs, Save a Life. Aortic dissection is the most serious complication that people with Marfan or Loeys-Dietz syndromes can face. Missed diagnosis still costs lives. During Aortic Dissection Awareness Week, we’re highlighting vital information everyone should know, beginning with today’s salient facts. https://tinyurl.com/4zxjhjua

Pectus Matters

24/07/2026

🌟 Marfan Europe Network is proud of its member association in Belgium! 🌟

Congratulations to the team behind the 101 Genomes Foundation and the GEMS App, winners of the Poster Pitch Competition at ECRD 2026, selected from more than 220 scientific posters presented by leading research centres from around the world.

Their innovative work on Marfan syndrome and neonatal Marfan syndrome has also been highlighted by EURORDIS, recognizing the impact of the GEMS project and its contribution to rare disease research and patient engagement.

We are delighted to see one of our member organisations receiving international recognition for advancing knowledge, supporting patients and families, and helping to shape the future of rare disease research.

👏 Congratulations to everyone involved, and thank you to all who have already joined GEMS!

🔗 Read more about the GEMS project:
https://www.eurordis.org/gems-app-search-for-answers-marfan-syndrome/

🔗 EURORDIS / ECRD 2026 LinkedIn post:
https://www.linkedin.com/posts/ecrd2026-ecrd2026-posterpitches-share-7486072849779249153-1UN6/

When Romain Alderweireldt's son was diagnosed with neonatal Marfan syndrome, doctors told the family he might only live another five months. Instead of accepting there were no answers, Romain set out to find them. What began as one father's determination to understand his son's condition became GEMS...

26/05/2026

📢 VASCERN: The ERN on rare multisystemic vascular diseases Webinar: Cardiovascular Surgery in Children with Connective Tissue Disorders

🗓 Date: Tuesday 9 June 2026
🕠 Time: 17:30 – 18:30
🌍 Language: English
💻 Platform: Microsoft Teams

🔤 Live captions are available in:
Danish, Dutch, French, German, Spanish, Italian, Hungarian, Croatian, Swedish and Romanian.
(Please note: this is only available when joining via the Teams desktop app or through a browser on your computer.)

⚠️ Important:
• No confirmation email will be sent.
• After submitting the registration form, the webinar link and calendar invitation will appear on the confirmation page.
• Please make sure to save the link or add it directly to your calendar.

🔗 Register here:
https://ec.europa.eu/eusurvey/runner/cardiovascular-surgery-webinar-june-2026

27/04/2026

We’d like to share an important event coming up this October!

The Marfan Trust (UK), in collaboration with the Marfan Foundation, is hosting the Second International Symposium: Living Better with Marfan, Loeys-Dietz, VEDS and Stickler.

📍 London
📅 Saturday 10th October
🎟 Free to attend (registration required)

Join medical experts and others from the community for a day of learning and connection. For more details and to register, check out the link: https://tinyurl.com/yvuymyzt

A gathering of experts, a community of patients, and the opportunity to meet, learn and thrive.

Join us on Saturday 10th October in London when we resume our collaboration with the Marfan Foundation for the Second International Symposium: Living Better with Marfan, Loeys-Dietz, VEDS and Stickler.

REGISTER NOW VIA THIS LINK: https://tinyurl.com/yvuymyzt

Attendees will learn from a team of international medical experts, liaise with professionals and others on a similar medical journey, and enjoy a “Creating Connections” lunch. Breakfast is also available and activities for Children 5-12 will be provided in a separate area.

The symposium is free, but registration is required.

The Second International Symposium/London: Living Better with Marfan, Loeys-Dietz, and VEDS is brought to you by The Marfan Foundation US, the Marfan Trust UK, The Aortic Dissection Charitable Trust and Annabelle’s Challenge.

The Marfan Foundation