Research

To date, there has been no research into gliomatosis cerebri in children. All we have are a few medical articles about one particular case, and they are essentially descriptive.

After the diagnosis of the disease in Elizabeth, a 19 year old girl, Elizabeth’s Hope was launched in the U.S. in collaboration with Weill Cornell Pediatric Brain and Spine Center, with the aim of carrying out genomic research into rare and inoperable tumours in infants. Researchers are searching for the genetic mutations that cause each type of cancer, including gliomatosis cerebri and DIPG.

From Spain, our mission is to drive research projects and create an international database of children with gliomatosis. The number of confirmed cases is low, given the rareness of the disease and its under-diagnosis. In order to do this, we will be contacting families that we have met over the internet and asking them for their cooperation; for this reason, our page is available in several languages and there is a forum set up for families.

We are aware that our project is an ambitious one, but even more aware of its importance in giving other children the chance that Izas never had.

DESCRIPTION AND OBJECTIVES

  1. Study the epidemiology of the disease in Spain
  2. Raise awareness about the disease and distribute a medical guide in hospitals
  3. Identify genetic anomalies in order to begin looking for therapeutic targets
  4. Establish new therapies, such as local therapy using oncolytic viruses and targeted virotherapy

We will, of course, make sure to announce the official launch of the project, as well as any developments.

HELP US TO SUCCEED