HealthReady has partnered with the Beckley Foundation for a virtual coffee break webinar program titled “Use Your Child’s Health Data for Better Outcomes in Neuroblastoma.” Neuroblastoma is a dangerous cancer that affects children, and it can leave patients and their families feeling like they don’t have many options; but patient data can be critical for making a difference.

In this program, parents will learn how they can utilize health data from their child for the betterment of the neuroblastoma community using a mobile phone app. This webinar is both an opportunity to hear feedback from the neuroblastoma community and find willing participants. 

About Neuroblastoma

Neuroblastoma is a type of cancer that appears in nerve tissue. Children are more frequently affected than adults. The direct cause of neuroblastoma is not known in most cases; in a small number of patients, an inherited mutation affecting the ALK gene has been implicated, but this only explains around two percent of cases at the most. Symptoms of neuroblastoma include a lump in the affected area which may be blue in color, bone and joint pain, loss of appetite, fatigue, and fever. Other symptoms vary depending on where the tumor is located; it typically originates in the adrenal glands but can also appear on the spine, neck, abdomen, or chest. Treatment approaches include immunotherapy, radiation therapy, chemotherapy, surgery, and stem cell transplant. Outcomes vary considerably; the five-year survival rate is 68 percent for patients between age one and fourteen. To learn more about neuroblastoma, click here.

A number of subjects related to the project will be covered during the presentation, such as your right to access your child’s data, the importance of reviewing the data, and the use of the HealthReady app and website.

This free event will have sessions held on May 6, May 13, and May 20. Click here to sign up and learn more.