Bethlem Myopathy
Organizations
Are there good support groups for Bethlem myopathy?
There are good support groups for people with Bethlem myopathy or for people who have close family members living with Bethlem myopathy. You can find support groups through the following organizations:
References
- Lampe AK, Flanigan KM, Bushby KM, et al. Collagen Type VI-Related Disorders. 2004 Jun 25 [Updated 2012 Aug 9]. In: Adam MP, Ardinger HH, Pagon RA, et al., editors. GeneReviews® [Internet]. Seattle (WA): University of Washington, Seattle; 1993-2019.Available from: https://www.ncbi.nlm.nih.gov/books/NBK1503/
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Where do I find other people with Bethlem myopathy?
Where do I find other people with Bethlem myopathy?
You can find other people who have Bethlem myopathy through various domains. There are national foundations and patient registries where you can cannot with other people who also have Bethlem myopathy or who have a child with Bethlem myopathy. Some of these include:
- Muscular Dystrophy Association
- Muscular Dystrophy UK
- Muscular Dystrophy Canada
- Cure CMD
- Muscular Dystrophy Australia
- Congenital Muscular Dystrophy International Registry
- Global Registry for COL6-releated dystrophies
Your doctor may also help you to find additional support groups. Social media may also be a way to connect with other people who also have Bethlem myopathy. This can be done through any form of social media.
References
- Lampe AK, Flanigan KM, Bushby KM, et al. Collagen Type VI-Related Disorders. 2004 Jun 25 [Updated 2012 Aug 9]. In: Adam MP, Ardinger HH, Pagon RA, et al., editors. GeneReviews® [Internet]. Seattle (WA): University of Washington, Seattle; 1993-2019.Available from: https://www.ncbi.nlm.nih.gov/books/NBK1503/
