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Victorian parents' plea after twins born with two rare genetic conditions

Victorian parents plea after twins born with two rare genetic conditions
When Victorian couple Louise and Raymond Pryde first set eyes on their beautiful newborn twins, they believed they were lucky enough to have two healthy babies after a long battle with IVF.
But in May this year, their 19-month-old daughter Aria died of a rare genetic condition called Vanishing White Matter Disease, a form of Leukodystrophy.
Just months before her death, Aria s twin brother Axel was diagnosed with an even rarer genetic disease, IQSEC2, for which he requires 24-hour care.
READ MORE:
Louise and Raymond Pryde with twins Axel and Aria, along with their big sister Charli. (9News) ....

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Greenwich Proclaims Feb. 26 as 'Rare Disease Awareness Day'

Richard Kaufman
For the past year, nearly all of the world’s attention has been on COVID-19, and rightfully so, as a once in a lifetime pandemic has wreaked havoc on the globe.
But on Friday, the Town of Greenwich hoped to shift some of the focus back on some of the lesser known diseases and ailments that families are facing everyday, by declaring Feb. 26 as Rare Disease Awareness Day.
First Selectman Fred Camillo issued a proclamation at Town Hall to John Hopper, President of the Greenwich-based Fibrolamellar Cancer Foundation (FCF), which represents one of the over 7.000 known rare diseases in the world. ....

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