Helpful Links

Jain Foundation resources


Muscular Dystrophy Association
The largest voluntary national association dedicated to neuromuscular diseases.

National Organization for Rare Disorders
Federation of voluntary health organizations helping people with rare diseases.

The European Organization for Rare Diseases.

Jain Foundation Facebook page

The Jain Foundation Facebook page is a place to get up to date information about the Foundation and post comments and questions.  This page is regularly monitored by Foundation staff.

Clinical and Scientific Information

Access to scientific journals, and links to sites providing full text articles.

NCBI (National Center for Biotechnological Information)
Clinical information and history of diagnosis of LGMD2B and Miyoshi Myopathy, as well as information about dysferlin (use numbers listed below to access the specific information).
> LGMD2B - # 253601
> Miyoshi Myopathy - # 254130
> Dysferlin - # 603009

Leiden Muscular Dystrophy pages
Scientific information on research and diagnosis of LGMD2B.
Non-scientific information for all types of Limb-girdle muscular dystrophies (LGMD).

UMD-DYSF mutational database
Database of identified dysferlin mutations and an interactive analysis of disease-causing mutation statistics and distribution, as well as bioinformatics tools for the interpretation of novel variants. Site publically available in late 2011.

Utah Program for Inherited Neuromuscular Disorders at the University of Utah

Offers clinical and multidisciplinary care and conducts research studies of LGMD.

Washington University (St. Louis) Neuromuscular Disease Center
Clinical and diagnostic information about numerous neuromuscular diseases, including LGMD2B and Miyoshi Myopathy.

Genetic and Rare Diseases Information Center (GARD)
A division of the NIH office of Rare Disease Research

List of FAQs about dysferlinopathy.

Stanford Neuromuscular Disorders Program
Conducts clinics, laboratory testing, research, teaching, and clinical trials in neuromuscular diseases.