Marfan Europe Network

24/11/2025

🌟 New Publication Alert! 🌟
We’re excited to share a wonderful article: “Marfan Europe Network: Together We Can!”

This piece beautifully highlights the mission, energy and collaboration behind the Marfan Europe Network. It shows how patient organisations across Europe are joining forces to support individuals and families, amplify awareness, and strengthen the connection between patients, clinicians and researchers.

💛 It’s a great reflection of what makes our community so special:
working together, learning from each other, and making real progress—step by step, country by country.

➡️ We invite everyone to give it a read and share it within your network.
The more people know about M.E.N, the stronger our collective voice becomes.

Together we can!

Marfan syndrome is a rare hereditable genetic disease, mainly caused by mutations in FBN1 leading to connective tissue defects. In this article of the patient advocacy series, we interview Tuija Ekeg...

07/10/2025

On Saturday 3rd October Marfan Initiative Österreich was invited to the patient day of the Marfan Bavaria group in a nice hotel at the Chiemsee
There were lectures about healthy nutrition and physiotherapy. In the afternoon Dr. Michael Huntgeburt from the heart center Munich spoke about heart rhythm disorders, heart medication, blood pressure and answered questions of the participants.
In breaks and after the presentations we could network and chat with the Bavarian Marfan patients.
Thanks to the team of Marfan Südbayern for a perfect day.

21/09/2025

Universität Bayreuth in Germany is doing an international survey
on patient perspectives in cardiovascular care. Your opinion matters and will help shape future healthcare in Europe.

👉 Scan the QR code on the poster or click the link below to join:
https://wonderl.ink/.project.patient.survey
The survey is available in English, German, Dutch, Spanish, Danish, and Czech.

Please share with others who may be interested!

19/09/2025

*Aortic Dissection Awareness Day*

Surveillance saves lives. Spotting change early can stop tragedies. This Aortic Dissection Awareness Day, we are sharing the guidelines outlining the frequency of scans for people with Marfan & Loeys-Dietz syndromes. Scan, spot, safeguard. https://bit.ly/46eC0Sk

TThe Aortic Dissection Charitable Trust

02/07/2025

This is an informative webinar on cerebrospinal fluid (CSF) leaks, a condition that can significantly impact individuals with Marfan syndrome and other hered...

20/04/2025

29/03/2025

Loeys-Dietz Awareness month💙
Thanks to the Loeys-Dietz Syndrome Foundation we share some facts in English.

12/03/2025

Loeys-Dietz awareness month 💙

Even though each individual with LDS may present differently, sharing the most common features helps with early detection and life-changing medial monitoring. Today's focus: skeletal (bones). Please share!

01/03/2025

Today is National Compliment Day in several countries.
So, here’s a heartfelt compliment to all our members for their endless dedication to raising awareness of Marfan, Loeys-Dietz, and related disorders. ❤️💙

February was Marfan Awareness Month, and in March, we continue with Loeys-Dietz Awareness Month.
Thank you for sharing, supporting, and for all the work each of you does to increase awareness. Together, we can! 🫶

A special thank you also to The Marfan Foundation and Loeys-Dietz Syndrome Foundation in the U.S. for their support during these awareness months. We appreciate the collaboration!

25/02/2025

Marfan awareness month 💙
This time, some facts in Spanish 🇪🇸

22/02/2025

Proud of our Austrian member 🇦🇹

https://terumoaortic.com/patient-journeys/margit-aschenbrenner/?fbclid=IwY2xjawImzxtleHRuA2FlbQIxMQABHRbfJiQY37Xrv-FKL2icyd9kbyTV1lD3bmoucHWAmtIca37F8CtAX9FbHg_aem_v3-PseUlUogoruoBTzXSeg

Margit Aschenbrenner received a RelayPro device in 2024 after discovering she and multiple family members have Marfan Syndrome.

19/02/2025

Marfan awareness month 💙
This time, some facts in German🇩🇪