Have you ever heard of Marfan syndrome? This rare inherited disorder affects connective tissue (fibers that support and anchor organs and other bodily structures) throughout the body. Marfan syndrome most commonly affects the blood vessels, eyes, heart, and skeleton. People with Marfan syndrome are typically tall and slender with disproportionately long arms, fingers, and legs. Additional characteristics include heart murmurs, extreme nearsightedness, abnormal spinal curvature, and flat feet.

As shared by The Marfan Foundation, February is Marfan Syndrome Awareness Month! This month is designed to raise Marfan syndrome awareness, honor and support those affected, spread education and knowledge, and encourage diagnosis and treatment.

How Can I Raise Marfan Syndrome Awareness? 

So you’d like to get involved in raising awareness for Marfan Syndrome Awareness Month—but don’t quite know where to start. No worries! Below, we have some varied suggestions on how you can take action:

• Share stories on social media. If you’re on social media, take a look at the people living with Marfan syndrome. Share their stories; like, comment, and retweet. Use hashtags like #MarfanAwareness to bring attention to the daily experiences of those living with Marfan syndrome. And if you yourself are living with it, don’t be afraid to share your own story! The Marfan Foundation also offers downloadable and shareable social media content. 

• Donate. If you’d like to support The Marfan Foundation and its international education and awareness programs, you can always donate to the Foundation. In fact, February 15th is the Marfan Awareness Day of Giving—the perfect time to make a donation! 

• Learn more about Marfan syndrome. How much do you know about Marfan syndrome? What about the underlying genetics, or the family impact? Take the time to read information online—whether research, on social media, or elsewhere—that enhances your knowledge of this condition. You can also register for The Marfan Foundation’s FREE educational Research Webinar Series. On February 23, Dr. Hall Dietz will discuss genetics research on Marfan syndrome. In later sessions in March and May, topics will include lung and eye research. 

Do you have other ideas on how to best raise Marfan syndrome awareness? If so, let us know! Tweet at us so we can learn what you’re doing!