The Marfan Foundation has a mission to improve the quality of life for patients living with Marfan syndrome and other aortic and vascular conditions.
This month, in honor of Marfan Syndrome Awareness Month, they celebrate some of the ways awareness can be spread about the needs of this community.
This organization emphasizes that any effort can make a difference for this patient community, no matter the size. They encourage all caregivers of those affected by this condition to take action toward awareness this month. Small victories add up.
Do what you can this month, and every month, for Marfan.
Below are some of their suggestions for spreading awareness.
The first thing you can do is work to improve your own knowledge and understanding of this rare disease and how it impacts patients.
On February 16 the organization is hosting a Personal Perspectives Panel so that people will have an opportunity to hear from patients themselves about how Marfan syndrome affects their daily lives. You can register for this panel here.
2) Use Social Media
Use social media to spread the word about Marfan syndrome! The Marfan Foundation has an Instagram, Twitter, Facebook, and even a LinkedIn. Share their posts or make your own!
You can also download graphics from the Foundation’s website or use one of their sample messages.
The legislative action team from the Foundation is working to ensure each governor receives a state proclamation for Marfan Awareness Month.
When you see the proclamation from your state pop up on the Foundation’s social media pages, share the post, and don’t forget to tag your legislators!
4) Wear Merchandise
Wearing merchandise with Marfan syndrome information is one of the simplest but most effective ways to spread awareness. You can order a t-shirt here!
5) Keep Up With The Blog
To hear more about the patient experience, stay tuned into the Marfan Blog this month! Every week there will be new posts from patients discussing their diagnosis or treatment journeys.
6) Financial Support
One final way you can support the Marfan syndrome community this month is by supporting Marfan Awareness Day of Giving on February 15th.
All donations go toward the education and awareness programs held by The Marfan Foundation throughout the year.