Help! I've Just Been Diagnosed!
Getting diagnosed is a complicated and scary life event. Often, patients are plagued with questions and concerns with 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 Lindsay Parsons, Patient Support Project Coordinator, to discuss diagnosis and treatment strategies early on. She can be reached at firstname.lastname@example.org.
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/