Help! I've Just Been Diagnosed!
Getting diagnosed is a complicated and scary life event. Often, patients are plagued with questions and concerns with often little place to turn for accurate and supportive answers.
The Loeys-Dietz Syndrome Foundation Canada is dedicated to providing support to patients and those affected by LDS. We are currently working with a dedicated committee of patients, advocates, and medical professionals to provide the best resources possible to newly diagnosed patients and their families. Check back often as we develop a working roadmap for new LDS patients.
Patients are encouraged to contact Joseph Galli, President of the Foundation, to discuss diagnosis and treatment strategies early on.
In the meantime, Loeys-Dietz Families, a dedicated community-run closed Facebook Group for patients and their loved ones, provides a good starting point. Click here to access, and introduce yourself: https://www.facebook.com/groups/LoeysDietz/