Raise Awareness: Share What You Want the World to Know
One of the most powerful ways to raise awareness about Marfan syndrome is by sharing your voice. Whether you live with Marfan syndrome or care about someone who does, your story helps educate others and build community.
You can send your story and picture to brandcomms@marfan.org. We’ll be glad to share as many as we can with the community during February.
You can also update your profile picture or create a square to use as you choose on social media. Here’s how:
We’ve created two easy-to-use Canva templates that allow you to update your profile picture or create a post to share online—along with a short personal message.
Choose Your Template (Choose from 3 options at each link)
- PUBLIC: “I live with…” For individuals who live with Marfan syndrome
- PUBLIC: “I care…” For family members, friends, caregivers, clinicians, or allies
How to Use the Canva Templates
- Open the template link you want to use.
- Click “Use template” (you’ll be prompted to log in or create a free Canva account if you don’t already have one).
- Customize your design: Add your photo (optional—some people prefer text-only, which is perfectly okay). Edit the text to reflect your experience or connection. Keep it short and authentic—one sentence is enough.
- Download your design: Click Share → Download, Choose PNG or JPG for social media.
- Post it online: Update your profile picture or share it as a post on platforms like Facebook, Instagram, LinkedIn, or X.
What to Say
You don’t need to share your whole story—just a brief thought can make a big impact.
Help Your Post Reach More People
When you share, consider:
- Adding #MarfanSyndrome, #KnowConnectThrive, or #MarfanAwareness
- Tagging The Marfan Foundation: Facebook & Instagram: @TheMarfanFoundation; X: @MarfanFdn LinkedIn: linkedin.com/the-marfan-foundation
- Encouraging others to participate: “I’m sharing to raise awareness—join me.”
Thank you for raising life-changing awareness!