Paiges Law NY

“Paiges Law”

2022

The Paige Elizabeth Keely Foundation Inc. 

To Amend the New York State Public Health Law, in relation to New York State, New Born Screening Program by providing further comprehensive Pediatric Screening to the Mandated New York State Newborn Screening Panel by adding, HHT sequencing

(6 genes) - Most comprehensive panel for Hereditary Hemorrhagic Telangiectasia (HHT) and TAAD sequencing (35genes) associated with thoracic aortic aneurysms and dissections (TAAD), Marfan syndrome, or related disorders.

To provide for further comprehensive Prenatal Screening Awareness to expecting mothers about Genetic Testing and awareness of being a

potential carrier of Hereditary Hemorrhagic Telangiectasia (HHT) and (TAAD), Marfan syndrome, or related disorders. HHT, sequencing (6 genes)-Most comprehensive panel for hereditary hemorrhagic telangiectasia. TAAD sequencing (35genes) associated with thoracic aortic aneurysms and dissections (TAAD), Marfan syndrome, or related disorders.

To provide for further comprehensive Awareness, Education & Training annually in our Schools & for First Responders about & how to potentially identify and properly handle a possible Brain AVM (Arteriovenous Malformations), Brain Aneurysm and Stroke.

To make an addition to the current New York State, Kindergarten Registration process by adding comprehensive AVM and Aneurysm Awareness educational information to inform families about Genetic Testing and awareness of being a potential carrier of Hereditary Hemorrhagic Telangiectasia (HHT) and (TAAD), Marfan syndrome, or related disorders. HHT, sequencing (6 genes)- Most comprehensive panel for hereditary hemorrhagic telangiectasia. TAAD sequencing (35genes) associated with thoracic

aortic aneurysms and dissections (TAAD), Marfan syndrome, or related disorders.