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DuchenneConnect https://www.duchenneconnect.org/ it is a website for all BMD/DMD sufferers (despite the name) that offers some good information about the BMD condition, updates on studies, and other good information.
The most important part is the patient genetic registry. This registry allows BMD patients to enter information about their genetic problem into an anonomyzed database to help researchers better understand what problems people have and therefore how to target treatment studies. If you register your anonoymous information is compiled with data from around the world. There is a severe shortage of BMD patients in the registry (only 80!)...the result of this, is that BMD will not be able to be addressed well by researchers. A big plus for doing it, is that they will notify you personally/anonymously if there are any studies or treatments that could apply to your specific genetic condition....this is a HUGE deal.
I strongly encourage you to go to the website and participate. The more BMD folks we can get entered, the bigger hope we have for potential treatments that are effective for BMD....if we don't....we will continue to be overlooked and underserved. |
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K. Goodfellow |
