Enroll in Research
Here are a few researchers working on Titin that you can contact:
Boston Children’s Hospital
Casie Genetti, Genetic Counselor
Study of atypical titinopathies, including persons with skeletal or cardioskeletal symptoms and single TTN variants.
Jen Roggenbuck, MS, CGC (Genetic Counselor)
Ohio State University
Gene and heart disease research:
Prof. Diane Fatkin, MD
Victor Chang Cardiac Research Institute and St Vincent’s Hospital, Australia
For help with diagnosis:
Prof Bjarne Udd, MD, PhD
Tampere Neuromuscular Center
Folkhälsan Research Institute, Helsinki
Titin research publication library hosted by Cure CMD see here.
Please enroll in The Congenital Muscle Disease International Registry! www.cmdir.org