by Gabbie Nadeau | Apr 25, 2019 | Uncategorized
By Karen Dandurant news@seacoastonline.com PORTSMOUTH — May 11 is awareness day for Cornelia de Lange syndrome, a rare genetic disorder. The Lyons family of Portsmouth knows all about it. Their son Luke, now 11, was born with CdLS, which has variations from mild...
by Gabbie Nadeau | Apr 16, 2019 | Research News
A new blood test called EpiSign may help identify complex and hard-to-diagnose genomic imprinting disorders such as Prader-Willi syndrome (PWS). EpiSign, available in two versions, can diagnose 19 complex disorders. This newly available diagnostic tool, which...
by Gabbie Nadeau | Mar 12, 2019 | Uncategorized
“We had waited 10 weeks to see our beautiful baby on the ultrasound screen again. Do to an insurance issue preventing us from getting any scans between 20 and 30 weeks, naturally my anxiety was overwhelmingly high that morning of our 30-week scan, the morning our...
by Gabbie Nadeau | Feb 28, 2019 | Uncategorized
Dear CdLS Community, On this day – February 28th – the rarest day of the year, we take a moment from our daily lives to bring awareness about our community and what it means to live with a rare syndrome or disease. I had the opportunity yesterday to listen...
by Gabbie Nadeau | Feb 4, 2019 | Uncategorized
Each year on the second Saturday of May, CdLS Awareness Day is celebrated nationwide. The goal of Awareness Day is to raise awareness of CdLS through passionate volunteers and inspire people to learn about the Foundation. This year the CdLS Foundation will be holding...
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