Welcome!
Whether you're a newly diagnosed patient, a long-term patient, a family member, a friend, or simply someone interested in Marfan syndrome, our mission is to offer valuable information about Marfan syndrome. Learn more about the condition, stay updated with our valuable resources and events to support your well-being!
What is Marfan Syndrome?
Learn more about Marfan Syndrome
Learn more about what Marfan syndrome is with topics such as symptoms, diagnoses and causes.
Research Updates
As research is blooming, it's difficult to keep up with all updates. Currently our team is working hard on bringing the first research updates to you!
Conference
In 2025, we will be organizing a conference dedicated to Marfan syndrome, where insights and knowledge can be shared. More information about this event will follow in the upcoming months.
Facts about Marfan Syndrome
1 in 5,000 People
Marfan syndrome affects about 1 in every 5,000 people worldwide, making it a relatively rare condition.
No Cure, but Manageable
While there is no cure, Marfan syndrome can be managed with proper medical care, lifestyle adjustments, and early interventions.
Inheritance
Marfan syndrome is inherited in an autosomal dominant pattern, meaning a parent with the condition has a 50% chance of passing it to their child.
Eye Problems
Vision issues like nearsightedness, lens dislocation, and early cataracts are common in those with Marfan syndrome.
Flexible Joints
Many individuals with Marfan syndrome have unusually flexible joints, but they are also prone to dislocations and early-onset arthritis.
Heart Concerns
The condition can cause life-threatening complications in the heart and aorta, making regular cardiovascular check-ups crucial.
Tall and Thin Frame
People with Marfan syndrome often have long limbs, fingers, and toes, along with a tall and slender build.
Genetic Disorder
Marfan syndrome is a genetic condition that affects the body's connective tissue, impacting the heart, blood vessels, eyes, bones, and joints.
About Us & Contact
"From Cell Being to Well Being", our team of 10 dedicated students from Maastricht University. Since 2023, we strive to improve the level of knowledge of patients, the communication between professionals and patients, and raise awareness about Marfan syndrome and associated conditions.