Press Briefing on PA 24-130 the new Rapid Genetic Testing for Critically Ill Infants
Negron, Alberto
*****PRESS ADVISORY*****
Press Briefing on PA 24-130 the new Rapid Genetic Testing for Critically Ill Infants Law Thursday, July 11th (1 pm at UConn Health, Farmington CT)
Farmington, CT – Representative Jillian Gilchrest, in partnership with UConn Health, Connecticut Children’s and The Jackson Laboratory will hold a press briefing on Thursday, July 11th at 1pm at the UConn Health to discuss a new law to provide better access to rapid genetic testing for undiagnosed, critically ill infants in the NICU.
WHAT: Public Act 24-130 requires medically necessary Medicaid coverage for rapid Whole Genome Sequencing (rWGS) for certain critically ill infants. rWGS delivers accurate diagnoses more quickly to inform clinical decision making for patients, especially those with rare diseases, suspected genetic disorders and for undiagnosed, chronically ill children. Roughly 80% of all rare diseases are genetic, and an estimated 25% of infants in Level IV Neonatal Intensive Care Units (NICU) have an undiagnosed rare disease, making rWGS an important tool in shortening the time to diagnosis for these patients.
WHEN: Thursday (July 11th) at 1pm
WHERE: UConn Health
UConn John Dempsey Hospital (the tall tower on campus)
Mezzanine Level
263 Farmington, Avenue, Farmington, Connecticut
*** UConn John Dempsey Hospital tower lobby access and parking is via the “H” hospital parking lot outside University Tower (click here for Directions)*** *** Media and Guest Parking is available in the open air “H” hospital parking lot or inside nearby Garage 3 ***
WHO:
• Patient Family Advocate: Ben King (Olivia's Light)
• Medical Provider: Lisa Dion, RN (Nurse Manager, Connecticut Children’s Neonatal Intensive Care Unit (NICU) at UConn Health)
• Researcher: Alexandra McClellan, CGC, MS (Clinical Research Project Manager at The Jackson Laboratory)
• State Legislators
Alberto Negron
Connecticut House Democrats | Press Aide