National Registry for Myotonic Dystrophy (DM) and Facioscapulohumeral Dystrophy (FSHD)
Connecting Patients with Researchers for Over 12 Years
Help Us Advance Research
The National Registry advances research in myotonic dystrophy (DM) and FSHD by helping patients to participate in clinical studies. These studies help doctors, investigators, and care providers better understand the biology, progression, and other important issues in DM and FSHD.
Help Us Learn What's Important to You and Your Family
Registry members complete questionnaires every year about their symptoms. We collect and track your clinical information which can lead to a better understanding of DM and FSHD, how symptoms changes over time, and how to improve care for patients.
Help Us Create a Team for DM and FSHD
The Registry promotes sharing of information about DM and FSHD between care providers, researchers, and patients. This teamwork allows all key players to learn from each other, discuss which symptoms are most important, and strive for improvements in clinical care and therapeutic treatments.
Jim Hilbert and Liz Luebbe
Toll free: (888) 925-4302
Help us make a difference!