MYOTONIC DYSTROPHY FOUNDATION

Cause Area

  • Health & Medicine
  • People with Disabilities

Location

PO BOX 29543SAN FRANCISCO, CA 94129 United States
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Organization Information

Mission Statement

The Myotonic Dystrophy Foundation (MDF) is the world's largest patient organization focused solely on myotonic dystrophy. Our mission, "Care and a Cure," is to enhance the quality of life of people living with myotonic dystrophy (DM) and advance research focused on treatments and a cure.

Description

MDF fulfills its Care and a Cure mission providing:

-Support, Education and Resources to people and families living with DM. Examples include:

  • Support Groups - 20 MDF trained groups in the U.S., plus links to international groups
  • MDF Toolkit - for patients and their physicians
  • MDF Warmline - staffed phone support
  • MDF website with information, resources and a digital academy (over 200 hours of videos and webinars)
  • MDF Annual Conference - focuses on the latest information on daily living strategies and products, updates on research and advocacy, and more
  • Webinars and other assistance and education programs
  • Find a Doctor referral list

-Research to find treatments and a cure

-Advocacy for legislation, research, and infrastructure initiatives that will advance our understanding of myotonic dystrophy, accelerate drug development, and improve diagnosis and care.

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