If you have a connective tissue condition or are seeking an evaluation for one, you know that you need to see a cardiologist to evaluate your heart, an orthopedist to evaluate your bones and joints, and an ophthalmologist to evaluate your eyes. But what is the role of the medical geneticist?
The ball has dropped, and we rang in the New Year. Ready or not, 2019 is here.
Maggie, with her mom, Jennifer, at the Foundation's Boston Walk for Victory in June.
As anyone with a rare disease will tell you, the health journey is extremely nuanced and complex. It’s difficult enough having to deal with the symptoms themselves, but managing one’s care makes it that much more challenging.
“Oh, my goodness, how skinny you are.”
The Marfan Foundation announced that, starting today, it is making a new app available for free to people with Marfan and related disorders – and their families – to securely manage their medical records.