Dad Went to Bed with a Cough and Died of a Cardiac Arrest. 6 Years Later, the Same Happened to His Son (Exclusive)

Jason Selvey died six years before his son, Daniel, due to the rare genetic illness Alagille Syndrome ...

My husband went to bed with a ‘mild cold’ and I woke up to him dying… years later our son died an identical death

AMBER Selvey’s husband Jason went to bed with a mild cold in 2017 – but she woke up to him ‘convulsing and not breathing ...
The Express Tribune

Dad went to bad coughing and died of cardiac arrest, years later the same tragedy struck his son

A mother in Kent, England is sharing her family’s devastating story after losing both her husband and son to sudden cardiac ...
Nature

Alagille Syndrome And Associated Liver Diseases

Alagille syndrome is a rare multisystem disorder that primarily affects the liver, heart, and kidneys, and is most frequently associated with pathogenic mutations in the JAG1 gene, with a smaller ...

Dad and son die in their sleep due to rare condition

'We shouldn't lose children before ourselves.' ...
Baylor College of Medicine

Novel approach prevents liver damage in animal models of Alagille syndrome

Alagille syndrome, a genetic disease estimated to affect 1 in 30,000 individuals, is caused by mutations in the gene JAG1 in most cases. The mutations affect multiple organs including the liver where ...
MedCity News

Ipsen Itching Drug Scratches Off a Second FDA Approval in Rare Liver Indication

An Ipsen drug developed to treat the severe itching that accompanies certain liver disorders is now FDA approved for treating this complication in patients with Alagille syndrome. It’s the second ...
Monthly Prescribing Reference

Odevixibat Gets Priority Review for Alagille Syndrome

Credit: Getty Images. The sNDA is supported by data from the ASSERT study, which included patients less than 17 years old with genetically confirmed Alagille syndrome. The Food and Drug Administration ...

Mum loses husband and son to same rare one-in-70,000 genetic condition

A devastated mum has been left grief-stricken after losing both her husband and son to the same incredibly rare condition ...
Business Insider

Ipsen receives CHMP positive opinions for Iqirvo® (elafibranor) in Primary Biliary Cholangitis and Kayfanda® (odevixibat) in Alagille Syndrome, two rare cholestatic liver ...

Ipsen receives CHMP positive opinions for Iqirvo ® (elafibranor) in Primary Biliary Cholangitis and Kayfanda ® (odevixibat) in Alagille Syndrome, two rare cholestatic liver diseases PARIS, FRANCE, 26 ...
Medscape

EU Backs Drug to Relieve Itching in Alagille Syndrome

A drug to treat severe itching in patients with Alagille syndrome should be granted a marketing authorization in the European Union under what the European Medicines Agency (EMA) termed exceptional ...