Have you ever heard of Marfan syndrome? This rare inherited disorder affects connective tissue in the body. Connective tissue supports organs and bodily structures like your skeleton, blood vessels, eyes, and heart – so people with Marfan syndrome have an increased risk of aortic damage. Marfan syndrome can manifest in many different ways, from a tall and slender build and an abnormally curved spine to extreme nearsightedness, heart murmurs, and a dislocated lens in the eye. People with this disorder are also 250x more likely to have an aortic dissection than others.

Early diagnosis and treatment are incredibly important in improving lifelong outcomes. Treatment is often supportive and focuses on preventing Marfan-related complications. This year, the Marfan Trust, which is the only Marfan charity in the United Kingdom, is working to raise awareness of what it means to manage Marfan syndrome.

February is Marfan Awareness Month. The Marfan Trust shared that this year’s theme is “Managing Marfan and Its Future.” Over the course of the month, the organization will share videos and written work related to surgical recovery, physical activity, mental health support, and other important elements of managing Marfan syndrome. Additionally (in the link above!) you can find a downloadable pamphlet with comprehensive information on Marfan syndrome. You can use this pamphlet to speak with your doctors or spread awareness elsewhere.

But if you’re looking for some additional ways to raise awareness this month, check out our ideas below.

Raising Marfan Syndrome Awareness

As anybody within the rare disease community knows, raising awareness can be a challenging, but necessary, mission. Rare diseases are underfunded and poorly understood. Through awareness campaigns, we can educate our communities and provide better lives for those with rare conditions. For Marfan Awareness Month, consider taking part through:

• Sharing stories. If you or a loved one has Marfan syndrome, you can share your story on social media – or contact Patient Worthy for help writing an article! Your story is personal and impactful; it deserves to be told. You can write about what the diagnostic process was like, the Marfan syndrome community, research you want to see done, how you manage various aspects of your condition, or any other topics that feel personally important. Use hashtags on social media like #MarfanAwarenessMonth and #MarfanSyndrome to further your reach. The Marfan Foundation also offers a wonderful social media toolkit with graphics that you can use.
• Contact your local news stations. Ask if they might consider running a story to raise awareness, or speaking with a member of the community who has this condition.
• Volunteer. If you’d like to volunteer with the Foundation, learn more about opportunities here.
• Consider donating to organizations like the Marfan Foundation. These organizations play a crucial role in supporting families and individuals, advancing research and understanding, and identifying novel ways to connect the community and offer resources. Donations can help fund these measures.

Have other ideas for raising awareness? Contact us and let us know!