CureDuchenne announces the launch of “Newly Diagnosed,” a website created specifically to address the unique needs of families with boys who have been newly diagnosed with Duchenne muscular dystrophy so they could receive the right help for their child as soon as possible.
“When my son Hawken was diagnosed with Duchenne 17 years ago, there was little to no information available online or through our pediatrician. It took us months to identify clinicians who specialized in Duchenne and much longer to fully understand what would be in store for us as Hawken aged,” says Debra Miller, founder and CEO of CureDuchenne, in a media release.
“Our ‘Newly Diagnosed’ site will minimize the time and frustration for new parents and connect them with other parents who are further along in their journey for support, allowing families to get care early, which can make a big difference in the long run.”
CureDuchenne’s Newly Diagnosed site takes caregivers through eight important first steps, including: what to do when a positive screen for Duchenne is received; learning about Duchenne; joining the DuchenneXchange; locating a genetic counselor and physical therapist; building a care team; identifying clinical trials; registering for free CureDuchenne Cares events to learn about best practices in care; and staying informed on developments in research, therapies and clinical trials.
CureDuchenne is a nonprofit dedicated to helping to extend and improve the lives of boys who have Duchenne muscular dystrophy. For more information, visit CureDuchenne.
[Source(s): CureDuchenne, BusinessWire]