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Hey folks
If case you haven't been able to register yet, please make sure you all are registered in the DuchenneConnect website: www.duchenneconnect.org
This registry is the most important website/tool for the research/drug development community to have a good assessment of numbers of boys/young men with DMD/BMD and what mutations are out there.
Please register and be sure to include your dystrophin mutation. We need to make sure we are all counted, so that drug companies can start to do more MD related testing. Having an accurate count is important.
I have been personally requested by drug companies to help boost the numbers in the registry so they can better consider new drug development...so there are benefits for all of us to be counted as a group.
Kevin |
