Resources and Links

BooksWellstone Muscular Dystrophy Cooperative Research Centers

MDCRC, University of Rochester

MDCRC, University of Washington, Seattle

MDCRC, University of Massachusetts Medical School

MDCRC, University of Florida

MDCRC, UT Southwestern

More Information 

Wellstone MDCRCs Overview (NIH website)

Educational Materials

Muscular Dystrophy Coordinating Committee (MDCC)

Action Plan for the Muscular Dystrophies

Online Databases

Leiden Muscular Dystrophy pages

Utah Genome Center Dystrophin Mutation Tables

Inherited Peripheral Neuropathies Mutation Databases

Human Gene Mutation Database

Utah Genome Depot

National Institutes of Health Gene Expression Omnibus database

Institute for Neuromuscular Research

GeneTests

Clinical Trials

ClinicalTrials.gov

Antibody Repositories

The Developmental Studies Hybridoma Bank 

NeuroMab Hybridoma Facility

Disease Registries 

National Registry of Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy Patients and Family Members

MDSTARnet

Global FKRP (Fukutin Related Protein) Registry

The Global FKRP Registry is an international registry that collects genetic and clinical data about people affected by conditions caused by mutations in the FKRP (Fukutin Related Protein) gene, namely Limb Girdle Muscular Dystrophy type 2I (LGMD2I), and the rarer conditions Congenital Muscular Dystrophy (MDC1C), Muscle Eye Brain Disease (MEB) and Walker-Warburg Syndrome (WWS). Patients with mutation in the FKRP gene from anywhere in the world can register

The Global FKRP Registry aims to:

  • facilitate patient recruitment for clinical trials – registered patients may be able to participate in trials more easily;
  • accelerate research into new therapies for FKRP-related conditions;
  •  keep registered patients informed about research results, such as new treatments for FKRP-related conditions;
  • help specialists gain more knowledge about the prevalence, the epidemiology and the natural history of  FKRP-related conditions;
  • help achieve equal care for all patients with FKRP-related conditions worldwide.

     

To find out more and to register, please visit the Global FKRP Registry website: www.fkrp-registry.org

Patient Advocacy

Facioscapulohumeral Society

Myotonic Dystrophy Foundation

Muscular Dystrophy Association

Muscular Dystrophy Family Foundation

Parent Project Muscular Dystrophy

Jain Foundation

Other

"Maia's World" video from Muscular Dystrophy Camp