JAIN FOUNDATION
Helpful Links
JAIN FOUNDATION
Helpful Links
Helpful Links
Jain Foundation Resources
- Dysferlinopathy 101
- Clinician Directory
- Jain Foundation Dysferlin Registry
- Jain Foundation Active Research Projects
- Jain Foundation Active Clinical Projects
- Jain Foundation Dysferlin Scientific Conferences
- Jain Foundation Scientific Webinars and Meetings
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/
Helpful Links
Jain Foundation Resources
- Dysferlinopathy 101
- Clinician Directory
- Jain Foundation Dysferlin Registry
- Jain Foundation Active Research Projects
- Jain Foundation Active Clinical Projects
- Jain Foundation Dysferlin Scientific Conferences
- Jain Foundation Scientific Webinars and Meetings
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/