Myotonic Dystrophy Foundation

The Myotonic Dystrophy Foundation (MDF) is a global nonprofit organization based in Oakland, California, dedicated to supporting individuals and families affected by myotonic dystrophy (DM), a rare genetic disorder. Founded in 2007, MDF has become the largest patient advocacy group focused on DM, serving thousands of people across more than 78 countries. MDF operates under the mission of "Community, Care, and a Cure." It connects patients, families, and clinicians through support networks and educational resources. The organization advocates for improved healthcare access and provides tools for navigating the disease. MDF also accelerates research and drug development to advance treatments for DM. It has raised over $20 million to fund initiatives that support DM research and collaboration among over 45 companies. MDF offers comprehensive support, including patient navigation for newly diagnosed individuals, educational resources through webinars and publications, and advocacy for policies that enhance healthcare access and research funding. Its primary stakeholders include patients, families, clinicians, researchers, and pharmaceutical companies involved in DM drug development.