Syndrome de Marfan den-i.lu asbl

05/03/2026

🩵Did you know?

Although Loeys-Dietz syndrome and Marfan syndrome are both connective tissue disorders with a risk of aortic aneurysms, the pattern of blood vessel involvement can be different.

In Loeys-Dietz syndrome, aneurysms and other arterial abnormalities can occur throughout the entire arterial tree, meaning doctors often monitor blood vessels in multiple parts of the body.

In Marfan syndrome, aneurysms most commonly develop in the aortic root, the part of the aorta closest to the heart.

Understanding these differences helps doctors choose the right monitoring and treatment strategy for each condition.

05/03/2026

France has today sent a non-paper to the European Commission calling for the reintroduction of operating grants under EU4Health from 2026 and has circulated it to Health Attachés in Brussels. Austria, Belgium, Estonia, Greece, Ireland, Latvia, Lithuania, Luxembourg, Poland, Portugal, Slovenia, and Spain have all formally endorsed the initiative. The non-paper reflects widening concern within the Council about the removal of core funding for health civil society organisations.

We, together with fellow members of the EU4Health Civil Society Alliance, reiterate our call for the European Commission to reinstate operating grants for health non-governmental organisations.

🗣️ “We welcome the leadership shown by France and the Member States backing the reintroduction of operating grants. The fact that so many countries have raised this in Council confirms it is a structural issue for the credibility of the European Health Union.” - Virginie Hivert, Acting CEO of EURORDIS

👉 Read the full statement: https://go.eurordis.org/SVbzsn

03/03/2026

💙 Did you know?

Loeys-Dietz syndrome was first described in 2005 by Dr. Harry “Hal” Dietz and Dr. Bart Loeys. They identified the condition while studying patients who were initially suspected of having Marfan syndrome, but who showed important clinical and genetic differences.

Loeys-Dietz syndrome and Marfan syndrome are both hereditary connective tissue disorders and share several features, including a risk of aortic aneurysm and other cardiovascular complications. The discovery of Loeys-Dietz syndrome helped improve understanding of the broader group of connective tissue conditions and highlighted the importance of accurate genetic diagnosis for tailored care and monitoring.

01/03/2026

Yesterday marked the final day of Marfan Awareness Month. We would like to sincerely thank everyone who read, shared, and liked our posts. Your support truly makes a difference🙏.

A special thank you as well to the The Marfan Foundation — together, we are able to create greater awareness for Marfan syndrome and support those affected.

Today, we begin Loeys-Dietz Awareness Month🩵. We are proud to stand alongside the Loeys-Dietz Syndrome Foundation in raising awareness and supporting the Loeys-Dietz community.

We hope you will once again join us with the same enthusiasm — by reading, sharing, and liking our posts. Together, we can continue to make a meaningful impact.

28/02/2026

For Rare Disease Day, we're excited to announce that Orphanet's overview pages on rare diseases and orphan drugs have been reworked and updated:

👉️ About rare diseases & rare disease policies: https://www.orpha.net/en/other-information/about-rare-diseases
👉️ About orphan drugs: https://www.orpha.net/en/other-information/about-orphan-drugs

These pages provide an overview of key topics on rare diseases, rare disease policies and orphan drugs, accompanied by new infographics and links to external resources when available.

We've also published a new "Rare Diseases in Numbers" factsheet, which presents key figures on rare diseases in Europe and worldwide. Based on data from the July 2025 Nomenclature Pack release, the factsheet will be updated annually in February.

We hope you find these resources informative, and that they help expand understanding of rare diseases in Europe and beyond!

🩷 💚 💙

28/02/2026

28/02/2026

🇱🇺 Den 28. Februar markéiert all Joer den Dag vun de rare Krankheeten. Dëst ass eng Geleeënheet, eis Ënnerstëtzung ze weisen an eist Engagement fir Leit mat rare Krankheeten ze ënnersträichen.

Zu Lëtzebuerg si ronn 30.000 Leit – Kanner an Erwuessener – betraff. Och wann all rar Krankheet nëmmen eng limitéiert Zuel vu Patiente betrëfft, ass hire kollektiven Impakt op déi Betraffen an hir Famillje bedeitend.

Fir méi iwwer dës Realitéite gewuer ze ginn an déi disponibel Servicer kennenzeléieren, gitt op www.alan.lu.

🇫🇷 Le 28 février marque chaque année, la Journée mondiale des maladies rares. C'est l’occasion de montrer notre soutien et de réaffirmer notre engagement envers les personnes atteintes de maladies rares.

Au Luxembourg, environ 30 000 personnes – enfants et adultes – sont touchées. Même si chaque maladie rare touche un nombre limité de patients, l’impact cumulé sur les personnes atteintes et leurs familles, est considérable.

Pour en savoir plus sur ces réalités et découvrir les services d'aide disponibles, rendez-vous sur www.alan.lu.

🇬🇧 Every year on 28 February, Rare Disease Day is marked worldwide. It is an important occasion to raise awareness, show support and reaffirm our commitment to people living with rare diseases.

In Luxembourg, approximately 30,000 people — children and adults — are affected. Although each rare disease affects a limited number of patients the overall impact on those affected and their families is enormous.

To learn more about these realities and explore the support services available, visit www.alan.lu.

ALAN - Maladies Rares Luxembourg

28/02/2026

🌍💜 Today we stand with the 300 million people living with a rare disease. We are united with their families, friends, caregivers, advocates, and the medical professionals, researchers and organisations that working tirelessly to build a more equitable future for our community.

Together, we’re showing our colours, raising awareness, and inspiring change by talking about what equity means to us.

Thank you to everyone who’s taken part, whether you’ve lit up your home, shared your story, joined an event, or supported someone you love. By standing together we’re proving that our community is strong, united, and truly more than anyone can imagine. ✨

👉 Learn more and discover ways you can still get involved: https://go.rarediseaseday.org/NEWS

18/02/2026

⏰ The countdown is on: just 10 days until Rare Disease Day!

There’s still time to get involved! Join a local event, share your story online, or light up your home/office to show your support for the rare disease community!

🌍 This global day is about awareness, solidarity, and action. Every post shared, every event attended, and every light that shines helps make the rare visible and reminds us that we are stronger together.

Learn more about how to participate, find events near you, or access campaign materials: https://go.rarediseaseday.org/RDD

Let’s make this year’s Rare Disease Day more than you can imagine. 💪