The Precision Oncology Alliance

Chadi Nabhan, MD, of Caris Life Sciences, summarizes the Caris Precision Oncology Alliance and some of the abstracts the alliance presented at ASCO 2023.     The Precision Oncology Alliance includes partnerships with 83 cancer centers and academic...

Lafora Disease Explained

Jordi Duran, PhD, Associate Professor at Institut Químic de Sarrià in Barcelona, and Niki Markou, parent of a child with Lafora disease, discuss the symptoms and pathophysiology of Lafora Disease.     Lafora disease is a rare neurodegenerative condition that...

Fighting the Rare: Lafora Disease Documentary

Jordi Duran, PhD, Associate Professor at Institut Químic de Sarrià in Barcelona, and Niki Markou, parent of a child with Lafora disease, discuss the documentary Fighting the Rare.     Brothers Jordi and Jaume Duran created the documentary “Fighting the...

VAMP2 Diagnostic Journey

Alexandra Gaudlap, the founder of VAMP2.org and the Raging Raymond Foundation, discusses her son’s VAMP2 diagnostic journey.     VAMP2 stands for vesical-associated membrane protein 2. The VAMP2 gene encodes it. The protein is expressed in neurons and is...

Clinical Trial: Parent’s Experience

Brittany Cudzilo, a parent of two children with galactosemia, describes her daughter’s experience in a clinical trial testing a new treatment for this rare condition.  Galactosemia is a rare, autosomal recessive, inborn error of metabolism. It is characterized by the...