An invested group of researchers and patient advocates convened in Memphis for the first NACHO Consortium workshop – St. Baldrick’s Foundation
St. Baldrick’s Foundation made the following post on LinkedIn:
”Last week, an invested group of researchers and patient advocates convened in Memphis for the first NACHO (North American Consortium for Histiocytosis) Consortium workshop. NACHO, led by doctors Carlos Rodriguez-Galindo at St. Jude Children’s Research Hospital and Carl Allen at Baylor College of Medicine, is dedicated to clinical and translational studies and biological research for histiocytic disorders.
Histiocytic disorders are a group of diseases that occur when there is an over-production of white blood cells known as histiocytes that can lead to organ damage and tumor formation. Histiocytic disorders have not previously been a priority for large, multi-site research cooperative groups, which has left these disorders with a lack of progress towards increased knowledge and new therapies.
NACHO aims to bring together various hospitals and research institutions to collaborate and share experiences to further the research of histiocytic disorders. NACHO currently has 65 member institutions across the United States and Canada, and aims to keep expanding so that children all over North America will have access to clinical trials that could save their lives.
Stephanie and Jason Dagelewicz founded Move for Miles to support research projects related to Langerhans cell histiocytosis, the type of rare cancer their son has, and partnered with the St. Baldrick’s Foundation to support the important work of NACHO. The opportunity to gather in the same room for 2 days of robust academic discussion and connecting was valuable and rewarding for patient advocates and researchers and helped to shape the agenda for next steps.”
