JAIN FOUNDATION

Helpful Links

JAIN FOUNDATION

Helpful Links

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Helpful Links

Jain Foundation Resources

 

Organizations

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

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

EURORDIS
The European Organization for Rare Diseases.
www.eurordis.org

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.
www.facebook.com/JainFoundation

Clinical and Scientific Information

PubMed
Access to scientific journals, and links to sites providing full text articles.
www.ncbi.nlm.nih.gov/entrez/query.fcgi

NCBI (National Center for Biotechnological Information)
Clinical information and history of diagnosis of LGMD2B and Miyoshi Myopathy 1, as well as information about dysferlin (use numbers listed below to access the specific information).
www.ncbi.nlm.nih.gov/sites/entrez?db=OMIM
> LGMD2B – # 253601
> Miyoshi Myopathy 1 – # 254130
> Dysferlin – # 603009

Leiden Muscular Dystrophy pages
Scientific information on research and diagnosis of dysferlinopathy.
www.dmd.nl/dysf_home.html
Non-scientific information for all types of Limb-girdle muscular dystrophies (LGMD).
www.dmd.nl

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.
www.umd.be/DYSF

Utah Program for Inherited Neuromuscular Disorders at the University of Utah
Offers clinical and multidisciplinary care and conducts research studies of LGMD.
upin.genetics.utah.edu

Washington University (St. Louis) Neuromuscular Disease Center
Clinical and diagnostic information about numerous neuromuscular diseases, including dysferlinopathy.
neuromuscular.wustl.edu

Genetic and Rare Diseases Information Center (GARD)
A division of the NIH office of Rare Disease Research
List of FAQs about dysferlinopathy.
https://rarediseases.info.nih.gov/diseases/2003/qualitative-or-quantitative-defects-of-dysferlinA/21100/Dysferlinopathy.aspx

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

Helpful Links

Jain Foundation Resources

 

Organizations

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

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

EURORDIS
The European Organization for Rare Diseases.
www.eurordis.org

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.
www.facebook.com/JainFoundation

Clinical and Scientific Information

PubMed
Access to scientific journals, and links to sites providing full text articles.
www.ncbi.nlm.nih.gov/entrez/query.fcgi

NCBI (National Center for Biotechnological Information)
Clinical information and history of diagnosis of LGMD2B and Miyoshi Myopathy 1, as well as information about dysferlin (use numbers listed below to access the specific information).
www.ncbi.nlm.nih.gov/sites/entrez?db=OMIM
> LGMD2B – # 253601
> Miyoshi Myopathy 1 – # 254130
> Dysferlin – # 603009

Leiden Muscular Dystrophy pages
Scientific information on research and diagnosis of dysferlinopathy.
www.dmd.nl/dysf_home.html
Non-scientific information for all types of Limb-girdle muscular dystrophies (LGMD).
www.dmd.nl

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.
www.umd.be/DYSF

Utah Program for Inherited Neuromuscular Disorders at the University of Utah
Offers clinical and multidisciplinary care and conducts research studies of LGMD.
upin.genetics.utah.edu

Washington University (St. Louis) Neuromuscular Disease Center
Clinical and diagnostic information about numerous neuromuscular diseases, including dysferlinopathy.
neuromuscular.wustl.edu

Genetic and Rare Diseases Information Center (GARD)
A division of the NIH office of Rare Disease Research
List of FAQs about dysferlinopathy.
rarediseases.info.nih.gov/GARD/Condition/2003/QnA/21100/Dysferlinopathy.aspx

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