Syndrome de Marfan den-i.lu asbl

28/07/2026

A tall, forceful man, Charles de Gaulle left a lasting political legacy. It was a little-known fact that this heroic figure, former President of France and once described as the "embodiment of France", had Marfan syndrome. Tenacious leader of the Free French Forces during World War Two, he cuts a singular figure in the black-and-white wartime footage. Whether inspecting the French Navy or walking alongside Britain's Prime Minister, Winston Churchill, he stands out, literally. His condition remained a family secret until only recently. https://tinyurl.com/3bhn9pt7

26/07/2026

The mention of Marfan syndrome summons a familiar image: tall, slender, long-fingered, narrow-faced. But syndromes, like lives, don't always fit neat descriptions. While children with MFS are, on average, taller than 95% of their peers by the age of three, not everyone with Marfan is tall or thin, nor do they all display its classic features. Derek Goodger is 5ft 7in and is educating doctors on how to identify the condition. During a recent assessment, he said he surprised many of the medics, who had expected someone with Marfan syndrome to be much taller. How tall are you? https://tinyurl.com/5y6cw9ke

26/07/2026

EURORDIS, la principale voix des patients atteints de maladies rares auprès des institutions européennes, des chercheurs, des autorités de santé …

23/07/2026

16/07/2026

Every life with Marfan syndrome tells a different story. Yet one feature is shared by the vast majority of patients: around 90% will develop some degree of involvement of the heart, aorta and blood vessels. Here is our resource on Marfan and the heart! https://tinyurl.com/mutxeh

13/07/2026

🇱🇺
Wéieng Rotschléi krut Dir scho vu Leit déi et zwar gutt gemengt hunn, awer clairement net wierklech verstanen hunn, wéi et ass mat enger rarer Krankheet ze liewen ?

W.e.g. net einfach hei an d'Commentairen schreiwen, mee eise kuerzen, anonymme Formulaire ausfëllen, fir dass Är Äntwert Deel vun eiser nächster Campagne ka ginn:

https://forms.gle/vzPZNkffE3As72WUA (Lëtzebuergesch)
https://forms.gle/YdQnyRb2H5wFTagW8 (Francais)
___________________________________
🇫🇷
Quels conseils avez-vous déjà reçus de la part de personnes bien intentionnées, mais qui n'avaient clairement pas vraiment compris ce que signifie vivre avec une maladie rare ?

Merci de ne pas simplement écrire votre réponse en commentaire, mais de plutôt remplir notre court formulaire anonyme, afin que votre réponse puisse faire partie de notre prochaine campagne :

https://forms.gle/YdQnyRb2H5wFTagW8

13/07/2026

Dr Child's Casebook: Hernias
An intricate web of fibres binding skin to muscle and muscle to bone, connective tissue quite literally holds us together. But when that web begins to weaken, its effects can emerge in unexpected places, including the muscle wall. It was this that prompted one supporter to ask whether hernias could be a feature of Marfan syndrome. Join the Trust today to find out more. https://tinyurl.com/2fm4tunf

01/07/2026

Midweek Awareness
Have a brilliant Wednesday Warriors

🔍 The Difference at a Glance

✅ Aneurysm = A weakened, bulging section of the aorta.

✅ Dissection = A tear in the inner lining that allows blood to split the layers of the aortic wall.

✅ Rupture = A complete tear through the wall of the aorta, causing severe internal bleeding.

27/06/2026

Aortic Dissection Awareness.
What is an Aorta? Believe it or not, many people have never heard of an Aorta let alone an Aortic Dissection.

Have the best day everyone 🙌🏻

16/06/2026

Bravo

Nous ne nous y attendions pas… Le 3 juin, 101 Genomes a présenté trois posters lors de la Conférence européenne …