Please find below resources for more information on congenital-onset muscle diseases and links for support groups, international registries and more:
- Congenital Muscular Dystrophy (CMD)
https://www.curecmd.org
https://www.mda.org
- Congenital Muscle Disease International Registry (CMDIR)
https://www.cmdir.org/
- Collagen VI-Related Dystrophies (COL6-RD)
https://www.ncbi.nlm.nih.gov/books/NBK1503/
- Giant Axonal Neuropathy (GAN)
https://rarediseases.org/rare-diseases/giant-axonal-neuropathy/
- RYR1-Related Myopathies
https://www.ryr1.org/
https://rarediseases.org/rare-diseases/ryr-1-related-diseases
For more general information, please click the links below.
https://rarediseases.org/
https://clinicaltrials.gov