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ADVANCING NEWBORN SCREENING FOR RARE GENETIC DISEASES
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ADVANCING NEWBORN SCREENING FOR RARE GENETIC DISEASES
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Magazine Article
ADVANCING NEWBORN SCREENING FOR RARE GENETIC DISEASES
2022
Overview
[...]if your family has a child living with a rare genetic disease, and if that disease happens to be on your state's screening panel, that is excellent news for you. HARNESSING THE POWER OF PARENTS AND ADVOCACY GROUPS I feel fortunate to work for a company that is developing therapies for rare mineralization disorders, and that works closely with patient communities and advocacy groups to raise awareness of these diseases. GACI Global, a parent-led advocacy group, is just one example of the power of parents to raise awareness of a rare disease, shorten time to diagnosis, and hopefully find a treatment in the future.
Publisher
TCA EP World LLC
