Blog
LDSF Canada 2023 Rare Disease Day Statement
Transforming the Future of LDS “When you hear hoofbeats, don’t expect to see a zebra”. This adage was used to teach primary care professionals about looking for common conditions. But
Pain Resources and Clinics for Loeys-Dietz Syndrome
People with Loeys-Dietz syndrome may experience pain throughout the body. Pain can be chronic (lasting more than three or four months) and negatively impact quality of life. To help decrease
In Memory of Justin Fratino
Justin’s eulogy, delivered by his father Salvatore (Sal) Fratino: Justin was born on March 27, 1982 at 9:32 AM and 4 hours later, he had the 1st of many more
Genetics and Loeys-Dietz Syndrome
Loeys-Dietz syndrome (LDS) is a genetic condition that affects the body’s connective tissue. As a genetic condition, it can be traced back to your genes and may be passed on
Kristýna’s Story: “The story of an invisible”
My name is Kristýna, I am 28 years old and am a graduate clerk. I currently work in a supermarket and have been living in Prague for 10 years, but
Hélène’s Story
My name is Hélène, I am 45 years old, and my husband and I have 3 children. After over 20 years of doctors telling me not to worry about having