Myotonic Dystrophy Foundation

Governmental Agencies - United States

Centers for Disease Control and Prevention (CDC)
The CDC is an organization that is committed to achieving true improvements in people’s health. CDC applies research and findings to improve people’s daily lives and responds to health emergencies—something that distinguishes CDC from its peer agencies. Working with states and other partners, CDC provides a system of health surveillance to monitor and prevent disease outbreaks (including bioterrorism), implement disease prevention strategies, and maintain national health statistics. CDC also guards against international disease transmission, with personnel stationed in more than 25 foreign countries.
www.cdc.gov

National Center for Biotechnology Information (NCBI)
NCBI is a national resource for molecular biology information that creates public databases, conducts research in computational biology, develops software tools for analyzing genome data, and disseminates biomedical information - all for the better understanding of molecular processes affecting human health and disease.  Learn more about myotonic dystrophy
www.ncbi.nlm.nih.gov/

National Institutes of Health (NIH)
NIH is a part of the U.S. Department of Health and Human Services, the primary Federal agency for conducting and supporting medical reseaerch.  Helping to lead the way toward important medical discoveries that improve people's health and save lives, NIH scientists investigate ways to prevent disease as well as the causes, treatments, and even cures for common and rare diseases.
www.nih.gov

• ClinicalTrials.gov  a searchable listing of clinical trials conducted in the United States and around the world.
  ClinicalTrials.gov

• Genetics Home Reference, a guide to understanding genetic conditions such as myotonic dystrophy. 
  www.ghr.nlm.nih.gov/  View their medical glossary.

• GeneTests - a publicly-funded medical genetics information resource developed for physicians, other healthcare providers, and researchers. 
  www.genetests.org

National Organization of Rare Disorders (NORD)
NORD is an organization that provides information on rare diseases
www.rarediseases.org/

Online Mendelian Inheritance in Man (OMIM)
OMIM is a database of human genes and genetic disorders
www.ncbi.nlm.nih.gov/sites/entrez?db=OMIM

Neuromuscular Disorder Organizations - United States

Cure CMD
Cure CMD’s mission is to bring research, treatments and in the future, a cure for Congenital Muscular Dystrophies. Cure CMD will achieve this mission by working globally together with dedicated parent, government and research advocates. By focusing on this mission, Cure CMD will find and fund high potential research and clinical trials. Success will be determined by clinical applications that improve the lives of those afflicted with CMD’s.
www.curecmd.org

Jack Puymirat Lab
Dr. Jack Pymirat's research lab for myotonic dystrophy, which contains information about the disease.
www.jpuymiratlab.crchul.ulaval.ca/index.htm

Muscular Dystrophy Association (MDA)
The MDA is a voluntary health agency -- a dedicated partnership between scientists and concerned citizens aimed at conquering neuromuscular diseases that affect more than a million Americans.
www.mdausa.org

Myotonia Congenita Project
www.myotoniacongenita.org

Myotonic Dystrophy Foundation (MDF)
The MDF is a patient advocacy group dedicated to leading and mobilizing resources toward effective management, treatment and a cure for myotonic dystrophy.  The MDF also provides an online support community where families living with myotonic dystrophy can connect and learn from one another.   www.community.myotonic.org
www.myotonic.org

Parent Project Muscular Dystrophy (PPMD)
Parent Project Muscular Dystrophy’s mission is to improve the treatment, quality of life, and long-term outlook for all individuals affected by Duchenne muscular dystrophy (Duchenne) through research, advocacy, education, and compassion.
www.parentprojectmd.org